Non-motor symptoms of Parkinson’s disease have a significant impact on quality of life. Despite this, many non-motor symptoms remain unreported by patients and consequently untreated. This study explored barriers to help-seeking using two theoretical frameworks, the Common Sense Model of illness perception and Theoretical Domains Framework. A total of 20 participants completed semi-structured interviews to explore symptom beliefs and help-seeking behaviour. Uncertainty about the relationship of non-motor symptoms to Parkinson’s disease and lack of clarity around treatments were common. Embarrassment and communication difficulties were common for potentially sensitive symptoms such as sexual dysfunction. Symptom perceptions and beliefs about help-seeking acted as barriers to reporting non-motor symptoms.
BaronePAntoniniAColosimoC, et al. (2009) The PRIAMO study: A multicenter assessment of non-motor symptoms and their impact on quality of life in Parkinson’s disease. Movement Disorders24: 1641–1649.
2.
CaneJO’ConnorDMichieS (2012) Validation of the theoretical domains framework for use in behaviour change and implementation research. Implementation Science7: 37.
3.
CaneJRichardsonMJohnstonM, et al. (2015) From lists of behaviour change techniques (BCTs) to structured hierarchies: Comparison of two methods of developing a hierarchy of BCTs. British Journal of Health Psychology20: 130–150.
4.
ChaudhuriKRMartinez-MartinP (2008) Quantitation of non-motor symptoms in Parkinson’s disease. European Journal of Neurology15: 2–8.
5.
ChaudhuriKRMartinez-MartinPBrownRG, et al. (2007) The metric properties of a novel non-motor symptoms scale for Parkinson’s disease: Results from an international pilot study. Movement Disorders22: 1901–1911.
6.
ChaudhuriKRMartinez-MartinPSchapiraAH, et al. (2006) International multicenter pilot study of the first comprehensive self-completed non-motor symptoms questionnaire for Parkinson’s disease: The NMSQuest study. Movement Disorders21: 916–923.
7.
ChaudhuriKROdinPAntoniniA, et al. (2011) Parkinson’s disease: The non-motor issues. Parkinsonism & Related Disorders17: 717–723.
8.
ChaudhuriKRPrieto-JurcynskaCNaiduY, et al. (2010) The non-declaration of non-motor symptoms of Parkinson’s disease to health care professionals: An international study using the non-motor symptoms questionnaire. Movement Disorders25: 704–709.
9.
CraigPDieppePMacintyreS, et al. (2008) Developing and evaluating complex interventions: The new Medical Research Council guidance. BMJ337: a1655.
10.
De NooijerJLechnerLCandelM, et al. (2004) Short- and long-term effects of tailored information versus general information on determinants and intentions related to early detection of cancer. Preventive Medicine38: 694–703.
11.
DijkstraADe VriesH (1999) The development of computer-generated tailored interventions. Patient Education and Counseling36: 193–203.
12.
EloSKyngasH (2008) The qualitative content analysis process. Journal of Advanced Nursing62: 107–115.
13.
GallagherDALeesAJSchragA (2010) What are the most important non-motor symptoms in patients with Parkinson’s disease and are we missing them?Movement Disorders25: 2493–2500.
14.
GulliverAGriffithsKMChristensenH, et al. (2012) A systematic review of help-seeking interventions for depression, anxiety and general psychological distress. BMC Psychiatry12: 81.
15.
HinnellCHurtCSLandauS, et al. (2012) Non-motor versus motor symptoms: How much do they matter to health status in Parkinson’s disease?Movement Disorders27: 236–241.
16.
HobsonJPEdwardsNIMearaRJ (2001) The Parkinson’s Disease Activities of Daily Living Scale: A new simple and brief subjective measure of disability in Parkinson’s disease. Clinical Rehabilitation15: 241–246.
17.
HurtCSBurnDJHindleJ, et al. (2014) Thinking positively about chronic illness: An exploration of optimism, illness perceptions and well-being in patients with Parkinson’s disease. British Journal of Health Psychology19: 363–379.
18.
LeventhalHNerenzDSteeleC (1984) Illness representations and coping with health threats. In: BaumASingerJ (eds) A Handbook of Psychology and Health. Hillsdale, NJ: Erlbaum, pp. 219–252.
19.
Martinez-MartinPRodriguez-BlazquezCKurtisMM, et al. (2011) The impact of non-motor symptoms on health-related quality of life of patients with Parkinson’s disease. Movement Disorders26: 399–406.
20.
MiyasakiJM (2006) New practice parameters in Parkinson’s disease. Nature Clinical Practice Neurology2: 638–639.
21.
Moss-MorrisRWeinmanJPetrieK, et al. (2002) The Revised Illness Perception Questionnaire (IPQ-R). Psychology & Health17: 1–16.
PhillipsCJMarshallAPChavesNJ, et al. (2015) Experiences of using the theoretical domains framework across diverse clinical environments: A qualitative study. Journal of Multidisciplinary Healthcare8: 139–146.
24.
PolitisMWuKMolloyS, et al. (2010) Parkinson’s disease symptoms: The patient’s perspective. Movement Disorders25: 1646–1651.
25.
RickwoodDThomasK (2012) Conceptual measurement framework for help-seeking for mental health problems. Psychology Research and Behavior Management5: 173–183.
26.
RimerBKConawayMLynaP, et al. (1999) The impact of tailored interventions on a community health center population. Patient Education and Counseling37: 125–140.
27.
SeppiKWeintraubDCoelhoM, et al. (2011) The Movement Disorder Society Evidence-Based Medicine Review Update: Treatments for the non-motor symptoms of Parkinson’s disease. Movement Disorders26(Suppl. 3): S42–S80.
28.
SimpsonACSamuelMLawrenceV, et al. (2013) Seeking help for mood problems in Parkinson’s: Patient and carer perspectives (abstract). Movement Disorders28(Suppl. 1): 898.
29.
StackRJShawKMallenC, et al. (2012) Delays in help seeking at the onset of the symptoms of rheumatoid arthritis: A systematic synthesis of qualitative literature. Annals of the Rheumatic Diseases71: 493–497.
30.
YousafOGrunfeldEAHunterMS (2015) A systematic review of the factors associated with delays in medical and psychological help-seeking among men. Health Psychology Review9: 264–276.
31.
ZesiewiczTASullivanKLArnulfI, et al. (2010) Practice parameter: Treatment of non-motor symptoms of Parkinson disease: Report of the quality standards subcommittee of the American academy of neurology. Neurology74: 924–931.
