Beyond the burden: Measuring the quality of life impact of Parkinson's on family members/partners using FROM-16

Abstract

Background

Family members of people with Parkinson's disease (PwP) often experience significant burden and poor quality of life (QoL). However, existing research predominantly centres on caregiver burden, with limited exploration of the broader impact of Parkinson's disease (PD) on family QoL.

Aim

To measure the impact of a person's PD on the QoL of their family members and partners using the validated generic Family Reported Outcome Measure-16 (FROM-16).

Methods

A cross-sectional study recruited online UK family members/partners of PwP through patient support groups to complete the FROM-16.

Results

152 family members/partners (mean age=67 years, median=70, SD = 10.9; females=106) of patients (mean age=72.3, median=74, SD = 8.5; females=55) with PD completed the FROM-16. The FROM-16 mean total score was 15.3 (SD = 7.9), with 45% of family members/partners having a score ≥17, meaning “a very large effect” on QoL of family members. A significant predictor of family impact was if the patient was male. The most impacted areas were feeling worried, sad, and frustrated, and the impact on holiday, family activities, sleep and sex life.

Conclusions

A person's PD greatly impacts the QoL of their family members/partners. Their well-being has important implications for supporting PwP and nursing home placement, hence the need to measure this impact to provide tailored support to these family members/partners. FROM-16 could be used to measure the family impact of PD in the routine practice of different settings.

Plain language summary

The impact of Parkinson's on the quality of life of family members and partners

This study looked at how a person's Parkinson's affects the quality of life of family members and partners. The researchers used a questionnaire called the Family Reported Outcome Measure (FROM-16) to measure the impact on people's lives. The study showed that 76% of family members and partners of people with Parkinson's disease experienced moderate to extremely high negative effects on their quality of life. Family members were most affected emotionally—they often felt worried, sad, and frustrated. The caregiving also affected their other activities, such as going on holidays, spending time with family, getting good sleep, and enjoying intimacy. These results suggest that there is a need for this impact to be measured routinely by healthcare professionals, so that the right kind of support can be provided to partners and families, to improve their quality of life and to prevent family carers' exhaustion.

Keywords

PD family impact PD carer QoL FROM-16 PD spouse/partners PD secondary impact

Introduction

Parkinson's Disease (PD) is an age-related chronic neurodegenerative condition characterised by motor as well as non-motor impairments and typically starts between the ages of 50 and 65 years.^1,2 A progressive decline in functional abilities may render the individual incapable of self-care, resulting in partial or complete dependence on others. Around 80% of PwP are cared for by their families, mostly spouses/partners, however, caring for PwP may threaten the physical, psychological, emotional and functional health of family members/partners, impacting their quality of life (QoL).³

Chronic conditions impact family members and partners, leading to increased psychological distress, social isolation, and diminished QoL.^4,5 However, this burden is particularly pronounced in conditions with progressive decline, such as PD, where families have to adapt to evolving care needs while managing their own well-being. Despite growing recognition of caregiver burden in Parkinson's Disease (PD), the broader impact on the QoL of family members and partners remains inadequately studied, with the focus on ‘carer burden’, and using burden-specific instruments that emphasise stress, role strain, and economic hardship.^6,7 However, this narrow focus risks overlooking the multidimensional ways in which PD affects physical, psychological, social, and functional aspects of the lives of those who live alongside the patient—particularly spouses and adult children (the “Greater Patient”).⁸ Moreover, the conceptualisation and measurement of ‘burden’ remain complex due to varying definitions and the use of diverse assessment tools. Nonetheless, caregiver “burden” and “well-being” have been used interchangeably in the literature, although the two are often considered as distinct constructs.⁶ Chapell and Reed⁹ argue that perceived social support is strongly related to well-being but unrelated to burden, reinforcing the conceptual distinctiveness of the two concepts. This suggests that carers may experience improvements in QoL despite the presence of burden, highlighting the need to complement the usual focus on burden in caregiving research with an emphasis on QoL outcomes.^6,9 Moreover, a recent systematic review¹⁰ investigating care partner needs in PD found that 12 out of 13 quantitative studies failed to employ validated instruments for assessing these needs, underscoring the urgent need for standardised, validated tools to accurately capture caregiver needs both for clinical purposes and for informing effective policy and intervention strategies.

Some studies used the PDQ-Carer,¹¹ a validated Parkinson-specific carer measure, to assess QoL impact on PD carers. These studies have shown that impaired cognition and mobility in PwP led to reduced QoL in carers,^12,13 with longer duration of caring and older carer age being significant predictors of poor carer QoL.¹² PDQ-Carer can provide specific information about how PD affects carers, however it cannot provide any insights into how this impact compares to other conditions. Family QoL instruments such as the extensively validated generic Family Reported Outcome Measure (FROM-16),^14,15 which has been widely used to measure family impact across various medical conditions, could be used to address this gap. Yet, such instruments remain underutilised in PD research and clinical practice. The use of the standardised generic FROM-16 would allow comparison of the QoL impact experienced by PD carers with other chronic conditions and, through mapping, also allow generation of utility data.¹⁶ Such information is vital for equitable resource allocation in publicly funded healthcare.

The primary aim of the study was to measure the impact of a person's PD on the QoL of their family members and partners using the validated generic Family Reported Outcome Measure (FROM-16). The study tested the following hypotheses:

Female family members/partners of PwP experience a more negative QoL impact than males

Spouses/partners of PwP experience a greater impact on their QoL than other relationships.

The secondary aim was to compare the family impact of PD to that of other medical conditions, as measured by FROM-16.

Methods

Study design and recruitment

This was an online cross-sectional study conducted between April and November 2021, involving family members and partners of PwP recruited through Parkinson's UK, Parkinson's UK Cymru and Healthwise Wales (HWW).¹⁷ Ethical approval was given by the Cardiff University School of Medicine Research Ethics Committee (SREC reference: 21/19), which conforms to the principles embodied in the Declaration of Helsinki.

The study used convenience sampling to recruit study participants. The inclusion criteria included UK family members/partners of PwP aged ≥18 years and capable of operating an electronic device. The exclusion criteria included family members of deceased patients, family members aged<18 years, not capable of using electronic devices and family members not living in the UK. All family members/partners provided electronic consent to participate in the study after reading the participant information sheet embedded in the online questionnaire.

Assessment of family QoL

FROM-16

The impact on family members/partners of PD was measured using the validated FROM-16, a generic family QoL instrument, which measures the impact of any health condition on the QoL of adult family members/partners of patients of any age.¹⁴ The FROM-16 comprises 16 items, each with three response options: ‘Not at All’ (scoring 0), ‘A Little’ (scoring 1) and ‘A Lot’ (scoring 2). The 16 items are divided into two categories (domains): Emotional (comprising six items, maximum score of 12) and Personal and Social Life (comprising ten items, maximum score of 20). The lowest possible score of the FROM-16 is 0, and the highest is 32. The higher the total score, the greater the negative impact on the family member's QoL.¹⁵ Developed following interviews with 133 family members of patients across 26 medical specialities, FROM-16 has demonstrated high internal consistency (n = 120, Cronbach's α=0.91) and high reproducibility (n = 51, ICC=0.93).¹⁵ The Cronbach's alpha for the current study data was 0.92, confirming the reliability of the FROM-16 to measure family impact in PD. The FROM-16 has been extensively validated.^15,16,18,19 The construct validity was confirmed in the original FROM-16 development study through the correlation between FROM-16 and WHOQOL-BREF total scores (n = 119, r = -0.55, p < 0.001), and the correlation between FROM-16 and the patient's overall health score on the Global Health Scale (n = 120, r = -0.51, p < 0.001).¹⁵ The FROM-16 has established score meaning descriptor bands: 0–1 = no effect on quality of life of family member; 2–8 = small effect; 9–16 = moderate effect; 17–25 = very large effect; 26–32 = extremely large effect.¹⁸ FROM-16 longitudinal validity and the MIC value (MIC=4) have also been established.¹⁹ Furthermore, the FROM-16 has been mapped to EQ-5D-3L to generate utility values¹⁶ for the potential use and inclusion of family impact of disease in health economic appraisal.

Procedure

The online study was carried out using the Jisc academic survey platform,²⁰ which is General Data Protection Regulation (GDPR) compliant. The online questionnaire was available in two formats: ‘Patient and family member (FM)’ or ‘FM-only’. The ‘Patient and FM’ survey was directed to patients registered with Parkinson's UK and Parkinson's UK Cymru, while the ‘FM-only’ survey was directed to family members in situations where the patient was unable to provide consent due to the severity of their condition and with HWW, who recruited family members directly.

The online study survey had two sections; in section one, patients completed demographic information about themselves (sex, age, occupation, health condition, and country of residence) and chose and allowed their family member/partner to take part in the study. In the ‘family member-only’ survey, patient demographic information was completed by the family member.

Section two was completed by the family member/partner of the patient and comprised demographic questions about the family member (sex, age, occupation, and relationship to patient) and the FROM-16.

Data analysis

Descriptive analysis was carried out and included calculating mean, median, standard deviation and interquartile range of quantitative variables and frequency and proportion for categorical variables. Nonparametric Mann-Whitney U-test was used to compare the family impact of Parkinson's between male/female family members, and the Kruskal-Wallis test was used to compare the family impact between different relationships. Type I error probability was set at p < 0.05. The FROM-16 descriptive banding was employed to describe the impact of PD severity on family members/partners. Multiple linear regression was used to investigate relationships between the FROM-16 total score and age/gender of the PwP, family members' age and gender (female, male), family members' occupation (paid work, unemployed or retired) and relationship status (spouse, parent, adult children and others). Data analysis used IBM SPSS Statistics for Windows, version 27.

Results

Sociodemographic characteristics of the study participants

A total of 152 family members/partners (mean age=67 years, SD = 10.9; females=69.7%) of PwP (mean age=72.3, SD = 8.5; females=36.2%) completed the FROM-16 (Table 1). The PwP and their family members and partners were mostly from England (52%) and Wales (44%). Most PwP were retired (89%), with only 4% in full-time and 2% in part-time employment. Family members were 68% retired, with 20.4% in full-time and 4.6% in part-time employment (Table 1). Family members were mostly spouses/partners of the PwP (84.9%), followed by adult children (8.5%) (Table 1).

Table 1.

Descriptive and sociodemographic characteristics (n = 152).

Characteristics	Categories	Person with Parkinson's disease (n = 152) N(SD) or N (%)	Family member/partner (n = 152) N(SD) or N (%)
Age (years)	Mean (SD)	72.3(8.5)	67.0(10.9)
	Median	74	70
	Range	34–92	34–86
Gender	Male	96(63.1%)	45(29.6%)
	Female	55(36.2%)	106(69.7%)
	Prefer not to say	1(0.7%)	1(0.7%)
Occupation	Full-time employment	6(3.9%)	31(20.4%)
	Part-time job	3(2%)	7(4.6%)
	Unemployed	1(0.7)	3(2%)
	Unpaid work	2(1.3%)	3(2%)
	Education/training	NIL	1(0.7%)
	Homemaker	3(2%)	3(2%)
	Retired	135(88.8%)	103(67.8%)
	Rather not say	2(1.3%)	1(0.7%)
Country of residence	England	79(52%)
	Northern Ireland	2(1.3%)
	Scotland	4(2.6%)
	Wales	67(44.1%)
Relationship to patient	Spouse/partner		129(84.9%)
	Son/daughter		13(8.5%)
	Parent		1(0.7%)
	Other (Sibling, Father/Mother-in-law, Son/Daughter-in-law)		9(5.9%)

FROM-16 scores

The FROM-16 mean total score was 15.3 (SD = 7.9, median=15.5, IQR=13, n = 152). The mean score for the emotional domain=7.0 (SD = 3.1, max=12, 58%), with “feeling worried” having the highest mean score of 1.5, followed by “sad” (mean=1.4), “frustrated” (mean=1.2) and “difficulty caring” (mean=1.1). The mean score for the personal and social domain=8.4 (SD = 5.4, max=20; 42%), with the greatest effect seen for “effect on holiday” and “sleep”, with a mean score of =1.2, followed by effect on “family activities”, and “sex life”, each with a mean score of 1.1 (Table 2). These results show that the emotional impact of caring for PwPs was greater than the personal and social impact.

Table 2.

Mean total FROM-16 scores, domain scores and individual item scores of family members/partners of people with Parkinson's disease (n = 152).

FROM-16	Description	Mean (SD)	Median (IQR)	Range
Overall	FROM-16 total score	15.3 (7.9)	15.5 (13)	0–32
Domain 1	Emotional (6 items)	7.0 (3.1)	7(4)	0–12
FROM-16 items	Worried	1.5 (0.6)	2(1)	0–2
	Angry	0.8 (0.7)	1(1)	0–2
	Sad	1.4 (0.7)	2(1)	0–2
	Frustrated	1.2 (0.7)	1(1)	0–2
	Talking about thoughts	0.9 (0.8)	1(2)	0–2
	Difficulty caring	1.1 (0.8)	1(2)	0–2
Domain 2	Personal and Social Life (10 items)	8.4 (5.4)	9(7)	0–20
FROM-16 items	Time for self	1.0 (0.8)	1(2)	0–2
	Everyday travel	0.6 (0.8)	0(1)	0–2
	Eating habits	0.5 (0.7)	0(1)	0–2
	Family activities	1.1 (07)	1(1)	0–2
	Holiday	1.2 (0.8)	1(1)	0–2
	Sex life	1.1 (0.9)	1(2)	0–2
	Work or study	0.4 (0.6)	0(1)	0–2
	Family relationships	0.6 (0.7)	0(1)	0–2
	Family expenses	0.7 (0.7)	1(1)	0–2
	Sleep	1.2 (0.8)	1(1)	0–2

“The female family members/partners had a higher total FROM-16 score (mean=16.7, n = 106) than males (mean = 11.7, n = 45, p < 0.001). Female family members/partners of PwP also had significantly higher domain scores (Emotional: mean=7.6; Personal and Social: mean =9.2) than males (Emotional: mean=5.4; Personal and Social: mean =6.3, p < 0.05). This higher impact experienced by females was also observed across all individual FROM-16 items: each difference was significant (p < 0.05) except for “feeling frustrated”, effect on “sex life”, “eating habits” and “family expenses” where the difference was not significant (p > 0.05) (Table S1).

The most frequently recorded impacts on family members/partners QoL included feeling worried (94.1%; A little=38.8%, A lot =55.3%), feeling sad (90.8%; A little=40.1%, A lot=50.7%), feeling frustrated (82.9%; A little=44.1%, A lot=38.8%), impact on holiday (78.3%; A little=33.6%, A lot=44.7%), impact on family activities (77.7%; A little = 42.8%, A lot=34.9%), impact on sleep (75.6%; A little=35.5%, A lot=40.1%), difficulty caring (74.4%; A little=38.2%, A lot=36.2%), time for self (68.4%; A little=40.1%, A lot=28.3%) and impact on sex life (65.8%; A little=21.7%, A lot=44.1%) (Figure 1).

Figure 1.

Impact of a person's Parkinson's disease on family members/partners across the 16 items of FROM-16.

Contextualising the family members/partners’ quality of life using the FROM-16 severity score banding

The study explored the degree of severity of impact experienced by the family members/partners: 44.8% had a FROM-16 score ≥17, indicating “a very large impact” on the QoL of these family members. This included 11.2% who experienced an “extremely large impact” on their QoL. Only 3.3% (n = 5) of family members experienced “no impact” (Table 3).

Table 3.

FROM-16 score banding describing the impact of Parkinson's disease on the quality of life of family members/partners (n = 152).

FROM-16 score banding	Number of family members	Percentage of family members
No effect (0–1)	5	3.3
A small effect (2–8)	32	21.0
A moderate effect (9–16)	47	30.9
A very large effect (17–25)	51	33.6
An extremely large effect (26–32)	17	11.2

Impact of persons’ PD across family relationships

The FROM-16 mean total score differed depending on the relationship of the family member to the PwP. The majority of family members caring for PwP were spouses/partners. The mean FROM-16 score of spouses/partners was higher (mean=15.79, SD = 8.0, median=16, range=0–32, n = 129) than that of other relations (son/daughter: mean=13.62, SD = 8.0, median=16, range=1–23, n = 13); others: mean=11.3, SD = 7.1, median=9.5, range=2–23, n = 10) (Table S2). However, these differences in means were not statistically significant (Table S2).

Results of multiple linear regression

The mean age of male PwP was 73 years (SD = 8.7; min=34, max=92) while the mean age of female PwP was 71 (SD = 8.1; min=49, max=91). The age of PwP was significantly associated with higher FROM-16 scores in univariate analysis (B = 0.153, 95% CI: 0.004 to 0.301, p = 0.044), however, this association was no longer significant in the multivariate model (B = 0.121, 95% CI: −0.024 to 0.266, p = 0.102). Family members’ age was not significantly associated with FROM-16 scores (B = 0.009, 95% CI: −0.018 to 0.035, p = 0.526).

The gender of the PwP showed a consistent and significant association across models. Families of female patients reported lower impact (mean=11.84) compared to those of male patients (mean=17.20)(Univariate B = –5.444, 95% CI: −7.955 to −2.929, p < 0.001; Multivariate B = –6.020, 917.205% CI: −10.723 to −1.316, p = 0.012). Family members’ gender showed a significant association with family impact of PD in univariate analysis, with female family members reporting higher impact (mean=16.74) than that of males (mean=11.73) (B = 4.714, 95% CI: 2.035 to 7.393, p < 0.001). However, this effect was not retained in the multivariate model (B = –1.050, 95% CI: −6.030 to 3.929, p = 0.677). Multiple regression analysis showed that the independent and significant predictor of the family impact of PD was patient gender (Table 4).

Table 4.

Factors associated with the family impact of Parkinson's disease.

	Univariate				Multivariate
Variables	B	Lower 95%	Upper 95%	p-value	B	Lower 95%	Upper 95%	p-value
People with Parkinson's (PwP)
Age	0.153	0.004	0.301	0.044	0.121	−0.024	0.266	0.102
Gender (Female vs. Male)	−5.444	−7.955	−2.929	<0.001	−6.020	−10.723	−1.316	0.012
Family members of PwP
Age	0.009	−0.018	0.035	0.526
Gender (Female vs. Male)	4.714	2.035	7.393	<0.001	−1.050	−6.030	3.929	0.677
Family members’ occupation
Retired vs. employed	2.730	0.277	7.671	0.277
Unemployed^§ vs. employed	1.682	−6.316	9.680	0.678
Family member relationship
Spouse/partner vs. son/daughter	2.175	−2.374	6.725	0.346
Other^# vs. son/daughter	−2.315	−8.892	4.261	0.488

Dependent variable: FROM-16 total score; significant at p < 0.05;

^§Unemployed: family members' occupation status as unemployed, education/training, in unpaid jobs and homemakers;

^#Other: parent, sibling, father/mother-in-law, son/daughter-in-law.

Discussion

This study has measured the impact of a person's PD on the QoL of family members/partners using the validated FROM-16. Our findings suggest that PD greatly impacts family members/partners’ QoL, highlighting a need for measuring this impact in routine practice to support impacted family members/partners, ensuring holistic and sustainable PD care. The use of the generic FROM-16 instrument in this study enabled systematic comparison of family impact across multiple health conditions, highlighting the relative impact imposed by PD. However, for more detailed information about the impact of PD on caregiving, it would be helpful to use PDQ-Carer, a 29-item Parkinson's disease–specific tool with four domains (Social and Personal Activities, Anxiety and Depression, Self-Care, and Stress).¹¹ While both FROM-16 and PDQ-Carer measure the QoL impact of PD caregiving, PDQ-Carer looks specifically at the granulated impact of PD caregiving. On the other hand, the FROM-16 questionnaire which was created with family members across 26 specialities, including family members of PwP, incorporates wide aspects of family impact, including impact on family activities, family relationships, family expense and sex life. FROM-16 therefore captures different dimensions of impact, including effects on individual family member activities as well as couple or family activities, which also affect family members’ QoL directly or indirectly. The FROM-16 total score of all 16 items therefore reflects the overall QoL impact on an individual family member/partner but also reflects wider family impact. The researchers and policymakers will benefit from using both tools, as together they complement each other. PDQ-Carer might be useful in clinical trials and intervention studies targeting tailored support for carers. The FROM-16, due to its brevity and clinical score interpretation bands, might be useful in a busy clinical setting. Also, FROM-16 might be useful in policy, advocacy, and health economics, where broad comparability is needed. The mean FROM-16 score was 15.3, with 45% of family members having scores ≥17, indicating a ‘very large’ to ‘extremely large’ effect on their QoL. Only 3% reported ‘no effect’ of their relative's PD on their QoL. While significant impact on QoL of family carers in our study is consistent with other studies that have reported low QoL of PD carers,^21,22 it is in contrast to the findings of an Indian study, which showed that over half of caregivers perceived good or very good QoL.³ This could be explained on the basis of cultural differences between the UK and India, as people in India may perceive caregiving for PwP as less of a burden and more of a familial duty rooted in cultural values of responsibility and interdependence.²³

Caring for a person with PD impacted family members/partners across all items of FROM-16, though certain aspects were affected more markedly than others. The family members/partners of PwP experienced a huge emotional impact, with 95% reporting feeling worried, 91% feeling sad, and 82% feeling frustrated. This is consistent with other PD studies where carers reported anxiety, frustration and feelings of sadness by watching their loved one deteriorate.⁶

In our study, 74% of family members/partners reported that caring for PwP was difficult, which could be explained by the progressive interplay of physical, cognitive, emotional, and logistical demands that intensify over time. Moreover, PD typically emerges in older age, with spouses or partners, often older themselves with health problems,²⁴ facing added difficulties in providing sustained care. The mean age of the patients in this study was 72.3, and that of family members/partners was 67, which is consistent with other studies.^25–28

In our study, over one-third of family members/partners of PwP reported that their relatives’ PD impacted their holiday and family activities. Although family members and partners may seek social connection, factors such as physical fatigue, public reactions to Parkinson's symptoms, and stigma often contribute to heightened social isolation.⁶

Caring for PwP can have an impact on relatives’ sleep. In our study, 76% of family members/partners reported their relatives’ PD impacted their sleep. This is consistent with findings from a systematic review and meta-analysis that revealed that caregivers of PwP experience poor sleep quality, increased sleep latency and poor sleep efficiency.²⁹ This may lead to daytime sleepiness, dysfunction and tiredness, which may impact their ability to care for PwP. The poor sleep quality in carers of PD has been associated with patients’ poor sleep quality and nocturnal care demands,³⁰ leading to poor carer well-being and QoL.³¹

Many family members/partners (68%) reported that caring for a person's PD affected their ‘time for self’, which could lead to decreased QoL. This could be explained by a reluctance to leave PwP alone with caregivers perceiving their own needs as less important.³²

Two-thirds of family members reported that caring for PwP impacted their sex life. As most family members (85%) in this study were spouses/partners, Parkinson's symptoms and medication might have disrupted couples’ sexual intimacy and sexual desire. Although some authors have attributed these changes to a natural course of ageing,^28,33 people with younger-onset Parkinson's have experienced relationship strain as a result of diminished intimacy.^28,34 This disruption in the sexual life of PwP may be explained by a complex interplay of role shifts, emotional strain, the physical and psychological impact of PwP neurological symptoms and treatment side effects.³⁵ The effect on sex life may adversely affect couple dynamics and, in turn, patient care, underscoring the importance of targeted interventions such as relationship counselling.

Compared to other relationships (son/daughter and others), spouses/partners had a higher FROM-16 mean score, suggesting a greater impact of a person's PD on their QoL. However, this difference in scores was not statistically significant. The higher scores of FROM-16 for spouses could be explained by spouses being more likely to provide longer hours of care than other family members.

The current study observed gender differences in the family impact of PD. Female family members/partners of PwP experienced a significantly more negative impact on their QoL compared to male family members/partners, with females being more impacted across all items except eating habits, family expenses and sex life. Although female family members/partners reported significantly higher family impact in univariate analysis (B = 4.714, p < 0.001), this association was not significant in multivariate analysis (p = 0.677). On the other hand, PwPs who were male had a greater impact on the QoL of family members/partners than female PwPs (B = –6.02, p = 0.012) in multivariate analysis. This finding is consistent with previous research suggesting that family members/partners caring for male patients experience greater impairment of QoL than those caring for female patients.¹³ This may reflect differences in PwPs disease progression, their difficulty accepting being dependent on others, communication styles, or caregiving dynamics.

Comparison with the FROM-16 studies involving other chronic conditions

The family impact of PD is compared to that of other medical conditions’ FROM-16 data from the same wider study¹⁸ and from other studies (Figure S1 and Table S3). Compared to FROM-16 studies involving other chronic conditions also conducted during the COVID-19 pandemic, our study findings demonstrate that the impact of PD on family members/partners is higher than the family impact of diabetes (mean FROM-16 score=10.5)³⁶ and haematological conditions (mean FROM-16 score=14.0)³⁷ but similar to the family impact of COVID-19 (mean FROM-16 score=15.0).³⁸ However, the impact of PD on family members in this study is lower than the family impact of multiple sclerosis (mean FROM-16 score=16.9),³⁹ dementia (mean FROM-16 score=17.5)⁴⁰ and myalgic encephalomyelitis/chronic fatigue syndrome (mean FROM-16 score=17.9).⁴¹ Moreover, the mean FROM-16 score of this study is much higher than in other FROM-16 studies conducted prior to the COVID-19 pandemic (Figure S1). For example, a study of the family impact of chronic conditions across 26 medical specialities (mean FROM-16 score=12.4)¹⁵ and another of the family impact of malignancies (mean FROM-16 score=11.8)⁴² both reported lower mean FROM-16 scores than the current study.

While there are differences in total FROM-16 scores between PD and other conditions, only a clinically relevant difference (FROM-16 MID value=4 points)¹⁹ is between PD and diabetes, suggesting all other conditions have a comparable impact on families. This could be explained by diabetes being a condition that is manageable through medication and monitoring, keeping people with diabetes in good health. Although uncontrolled diabetes can lead to some very debilitating complications, progression is generally slow compared to other conditions such as multiple sclerosis, PD, dementia and cancer. Unlike diabetes, where symptoms are not physically visible unless complications arise, neurological conditions directly affect mobility, cognition and independence, and cancer treatments are intense and physically taxing, explaining a higher impact on family members. However, a broader understanding of how family impact varies across the conditions is provided by the FROM-16 severity scoring. 25% of family members/partners of people with diabetes had FROM-16 scores ≥17, meaning ‘a very large effect’ on the QoL³⁶ compared to 53% for dementia,⁴⁰ 51% for MS,³⁹ 45% for PD and 36% for haematological conditions.³⁷ This information is useful for resource allocation and for planning tailored support for families.

Comparison of impact across individual FROM-16 items between our study and studies involving other chronic conditions has shown that ‘feeling worried’ is the most reported family outcome across all conditions (Table S3). The ‘feeling of being worried’ and impact on sex life in family members/partners of PwP is comparable to family members/partners of MS, while the impact on sleep in family members/partners of PwP is comparable to that of family members of people with dementia (Table S3).

Limitations

The study has some limitations. Although the study was conducted during the COVID-19 pandemic, potentially amplifying reported levels of family impact, our findings align with pre-pandemic research on Parkinson's carers, suggesting that the observed impact reflects enduring challenges rather than temporary effects. The cross-sectional survey data in this study do not allow the establishment of a causal relationship between the concepts. The study did not collect data regarding the health conditions of care partners, the severity of the patients’ PD (e.g., Hoehn & Yahr stage), their non-motor symptoms, particularly cognition and time since diagnosis. All of these factors could plausibly influence caregiver burden and FROM-16 scores. Future research would benefit from longitudinal designs to capture the unpredictable and evolving nature of Parkinson's disease on caregiving, offering valuable insights into the underlying drivers of caregiver distress and informing targeted interventions to improve carer QoL. This study did not collect data on ethnicity or race and, therefore, cannot comment on how these could have impacted the caregiving experience. The study was conducted online, with participants recruited through patient support groups. This resulted in only recruiting participants capable of using electronic devices, thereby introducing selection bias. However, this was the only way to reach out to participants during the pandemic. Despite these limitations, this study provides important evidence on the impact of PD on UK family members and partners using a validated generic family-specific measure, the FROM-16.

Implications for research and practice

This study highlights the substantial negative impact of PD on the QoL of family members and partners, an aspect frequently overlooked in healthcare policy, service planning, and economic evaluations.⁴³ Our findings are consistent with previous reports,^6,9 reinforcing the need to recognise and address family carer well-being as a core component of PD care. Given the progressive and unpredictable nature of PD, supporting carers who themselves are old is essential to ensuring that PwP receive sustained and effective care. Failure to provide needed support may lead to carer exhaustion and premature institutionalisation of the PwP.⁴⁴ As family members, particularly spouses/partners, often serve as primary carers for PwP, it is critical to assess their experiences using family-specific QoL instruments. The FROM-16, with its interpretable score bands, offers a practical means of capturing family impact in routine clinical settings and guiding affected families toward appropriate support services.

Following the mapping of FROM-16 data to EQ-5D,¹⁶ there is now the potential for incorporating the family impact of PD into health economic evaluations. It is likely that effective novel therapies for PD will also improve the QoL of partners and family members. Measuring this additional utility benefit could strengthen the cost-effectiveness case for approving new drugs that benefit PwP. Furthermore, such routine measurement of PD patients’ family/partner QoL impact could predict PwP institutionalisation, and thereby act as a critical prompt for further intervention.

Conclusions

This study has shown that the person's PD greatly impacts the QoL of family members/partners. There is a need to measure this impact in routine practice, providing needed support to families while ensuring holistic and sustainable patient care.

Supplemental Material

sj-pdf-1-pkn-10.1177_1877718X261428288 - Supplemental material for Beyond the burden: Measuring the quality of life impact of Parkinson's on family members/partners using FROM-16

Supplemental material, sj-pdf-1-pkn-10.1177_1877718X261428288 for Beyond the burden: Measuring the quality of life impact of Parkinson's on family members/partners using FROM-16 by Rubina Shah, Sam Salek, Faraz M Ali, Kennedy Otwombe, Stuart J Nixon, Marie-Elaine Nixon, John R Ingram and Andrew Y Finlay in Journal of Parkinson's Disease

Footnotes

Acknowledgements

We are very grateful to PwP and family members/partners who agreed to participate in this study. We also wish to thank Parkinson's UK, Parkinson's UK Cymru and HWW for their support with participant recruitment for this study.

ORCID iDs

Rubina Shah

Sam Salek

Faraz M Ali

Kennedy Otwombe

John R Ingram

Andrew Y Finlay

Ethical considerations

The study was approved by the Cardiff University School of Medicine Research Ethics Committee (SREC reference: 21/19).

Consent to participate

All patients and family members gave their electronic informed consent.

Author contributions

RS primarily carried out the study, including data collection, analysis and interpretation, wrote the first draft and revised all documentation. SS and AYF equally contributed to the design, interpretation and supervision of the study and revised all study documentation and the manuscript. JRI, KO and SJN provided advice during the study and helped revise study documentation. SJN and M-EN reviewed patient and family member documents. AYF, SS, KO, JRI, FMA, M-EN and SJN reviewed the manuscript and agreed on the final submitted version of the manuscript.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of conflicting interests

RS, KO, SJN, and M-EN declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article; FMA is employed by Cardiff University, which generates income from the use of FROM-16; AYF reports personal fees from Novartis Lecture honorarium, personal fees from Medscape Podcast honorarium, personal fees from Eli Lilly Lecture honorarium, outside the submitted work; AYF and SS are joint copyright owners of the FROM-16: Cardiff University receives royalties for some uses, they receive a share under standard university policy; JRI received a stipend as immediate past Editor-in-Chief of the British Journal of Dermatology and an authorship honorarium from UpToDate. He is a consultant for Abbvie, Boehringer Ingelheim, Cantargia, ChemoCentryx, Citryll, Engitix, Incyte, Insmed, Kymera Therapeutics, MoonLake, Novartis, UCB Pharma, UNION Therapeutics, and Viela Bio. He is a co-copyright holder of HiSQOL, Investigator Global Assessment and Patient Global Assessment instruments for HS.

Availability of data and material

The data are available from the authors on reasonable request according to Cardiff University regulations.

Supplemental material

Supplemental material for this article is available online.

References

Raket

Oudin Åström

Norlin

, et al. Impact of age at onset on symptom profiles, treatment characteristics and health-related quality of life in Parkinson’s disease. Sci Rep 2022; 12: 526.

Schneider

Obeso

. Clinical and pathological features of Parkinson's disease. Curr Top Behav Neurosci 2015; 22: 205–220.

Baby

Chacko

Seetharaman

, et al. Burden and quality of life among caregivers of patients with Parkinson's disease. Indian J Continuing Nursing Education 2021; 22: 47–52.

Golics

Basra

Salek

, et al. The impact of patients’ chronic disease on family quality of life: an experience from 26 specialties. Int J Gen Med 2013; 6: 87.

Shah

Ali

Finlay

, et al. Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature. Health Qual Life Outcomes 2021; 19: 194.

Aamodt

Kluger

Mirham

, et al. Caregiver burden in Parkinson disease: a scoping review of the literature from 2017-2022. J Geriatr Psychiatry Neurol 2024; 37: 96–113.

Alshimemeri

AlSudais

Alamri

, et al. Burden, anxiety, and depression among caregivers of Parkinson's disease patients. J Parkinsons Dis 2024; 14: 1495–1505.

Basra

MKA

Finlay

. The family impact of skin diseases: the greater patient concept. Br J Dermatol 2007; 156: 929–937.

Chappell

Reid

. Burden and well-being among caregivers: examining the distinction. Gerontologist 2002; 42: 772–780.

10.

Hulshoff

Sun

Book

, et al. Care partner needs in Parkinson's disease: a systematic review of qualitative and quantitative data. J Parkinson Dis 2025; 15: 1043–1061.

11.

Jenkinson

Dummett

Kelly

, et al. The development and validation of a quality of life measure for the carers of people with Parkinson's disease (the PDQ-carer). Parkinsonism Relat Disord 2012; 18: 483–487.

12.

Morley

Dummett

Peters

, et al. Factors influencing quality of life in caregivers of people with Parkinson's disease and implications for clinical guidelines. Parkinsons Dis 2012; 2012: 190901.

13.

Henry

Lageman

Perrin

. The relationship between Parkinson's disease symptoms and caregiver quality of life. Rehabil Psychol 2020; 65: 137–144.

14.

FROM-16 . Family Reported Outcome Measure [Online] Available: https://www.cardiff.ac.uk/medicine/resources/quality-of-life-questionnaires/family-reported-outcome-measure [accessed] Oct 2024. 2024. 2024.

15.

Golics

Basra

Finlay

, et al. The development and validation of the family reported outcome measure (FROM-16)© to assess the impact of disease on the partner or family member. Qual Life Res 2014; 23: 317–326.

16.

Shah

Salek

Finlay

, et al. Mapping of family reported outcome measure (FROM-16) scores to EQ-5D: algorithm to calculate utility values. Qual Life Res 2024; 33: 1107–1119.

17.

Hurt

Ashfield-Watt

Townson

, et al. Cohort profile: healthWise Wales. A research register and population health data platform with linkage to national health service data sets in Wales. BMJ Open 2019; 9: e031705.

18.

Shah

Finlay

Salek

, et al. Meaning of family reported outcome measure (FROM-16) severity score bands: a cross-sectional online study in the UK. BMJ Open 2023; 13: e066168.

19.

Shah

Finlay

Salek

, et al. Responsiveness and minimal important change of the Family Reported Outcome Measure (FROM-16). J Patient Rep Outcomes 2024; 8: 38.

20.

Jisc . Online Surveys. The online survey tool designed for Academic Research, Education and Public Sector organisations 2021. Available from: https://www.onlinesurveys.ac.uk/.

21.

Martinez-Martin

Schapira

Stocchi

, et al. Prevalence of nonmotor symptoms in Parkinson's disease in an international setting; study using nonmotor symptoms questionnaire in 545 patients. Mov Disord 2007; 22: 1623–1629.

22.

Martinez-Martin

Skorvanek

Henriksen

, et al. Impact of advanced Parkinson's disease on caregivers: an international real-world study. J Neurol 2023; 270: 2162–2173.

23.

Bhasin

Bhardwaj

. Perceptions and meanings of living with Parkinson’s disease: an account of caregivers lived experiences. Int J Qual Stud Health Well-being 2021; 16: 1967263.

24.

Hand

Oates

Gray

, et al. The role and profile of the informal carer in meeting the needs of people with advancing Parkinson's disease. Aging Ment Health 2019; 23: 337–344.

25.

Hagell

Alvariza

Westergren

, et al. Assessment of burden among family caregivers of people with Parkinson's disease using the zarit burden interview. J Pain Symptom Manage 2017; 53: 272–278.

26.

Torny

Videaud

Chatainier

, et al. Factors associated with spousal burden in Parkinson's disease. Rev Neurol (Paris) 2018; 174: 711–715.

27.

Macchi

Koljack

Miyasaki

, et al. Patient and caregiver characteristics associated with caregiver burden in Parkinson's disease: a palliative care approach. Ann Palliat Med 2020; 9: S24–S33.

28.

Vatter

McDonald

Stanmore

, et al. A qualitative study of female caregiving spouses’ experiences of intimate relationships as cognition declines in Parkinson's disease. Age Ageing 2018; 47: 604–610.

29.

Sprajcer

Owen

Crowther

, et al. Sleep disturbance in caregivers of individuals with parkinsonism: a systematic review and meta-analysis. BMJ Open 2022; 12: e062089.

30.

Bartolomei

Pastore

Meligrana

, et al. Relevance of sleep quality on caregiver burden in Parkinson’s disease. Neurol Sci 2018; 39: 835–839.

31.

Wade

Pachana

Dissanayaka

. Factors related to sleep disturbances for informal carers of individuals with PD and dyadic relationship: a rural perspective. J Geriatr Psychiatry Neurol 2021; 34: 389–396.

32.

Lawson

Collerton

Taylor

J-P

, et al. Coping with cognitive impairment in people with Parkinson’s disease and their carers: a qualitative study. Parkinsons Dis 2018; 2018: 1–10.

33.

Martin

. Relational issues within couples coping with parkinsons disease: implications and ideas for family-focused care. J Fam Nurs 2016; 22: 224–251.

34.

Wootton

Starkey

Barber

. Unmoving and unmoved: experiences and consequences of impaired non-verbal expressivity in Parkinson's patients and their spouses. Disabil Rehabil 2019; 41: 2516–2527.

35.

Graziottin

Bertolasi

. Parkinson and sexuality. In: C

Castelo-Branco

Anglès Acedo

(eds) Medical disorders and sexual health: a guide for healthcare providers. Cham, Switzerland: 2024, pp.437–450.

36.

Shah

Finlay

Ali

, et al. Comparison of the impact of type 1 and type 2 diabetes on quality of life of families of patients: a UK cross-sectional study. Diabetes Obes Metab 2025; 27: 652–662.

37.

Shah

Finlay

Ali

, et al. Measurement of the major ignored burden of multiple myeloma, pernicious anaemia and of other haematological conditions on partners and family members: a cross-sectional study. Eur J Haematol 2024; 113: 117–126.

38.

Shah

Ali

Nixon

, et al. Measuring the impact of COVID-19 on the quality of life of the survivors, partners and family members: a cross-sectional international online survey. BMJ Open 2021; 11: e047680.

39.

Shah

Salek

Ali

, et al. Multiple sclerosis greatly impacts family members/partners: evidence using the Family Reported Outcome Measure (FROM-16). Mult Scler J Exp Transl Clin 2025; 11: 20552173251338762.

40.

Shah

Salek

Ali

, et al. Dementia and its profound impact on family members and partners: a large UK cross-sectional study. Alzheimer Dis Assoc Disord 2024; 38: 338–343.

41.

Vyas

JMN

Singh

Ephgrave

, et al. Impact of myalgic encephalitis / chronic fatigue syndrome (ME/CFS) on the quality of life of people with ME/CFS and their partners and family members: an online cross-sectional study. BMJ Open 2022; 11: e058128.

42.

Chantarasap

Johns

Pairojkul

, et al. Validation of the Thai version of the family reported outcome measure (FROM-16)© to assess the impact of disease on the partner or family members of patients with cancer. Health Qual Life Outcomes 2019; 17: 32.

43.

Dowding

Shenton

Salek

. A review of the health-related quality of life and economic impact of Parkinson’s disease. Drugs Aging 2006; 23: 693–721.

44.

Mosley

Moodie

Dissanayaka

. Caregiver burden in Parkinson disease: a critical review of recent literature. J Geriatr Psychiatry Neurol 2017; 30: 235–252.

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