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Abstract

Background:

Nontuberculous mycobacterial lung disease (NTM-LD) is a chronic infection of the lungs with a high symptom burden. NTM-LD treatment is typically long and complicated, which can impact quality of life and mental health. Increased support for psychological challenges is a priority for this population.

Objectives:

We describe integrating psychological care into a multidisciplinary outpatient NTM program, patient characteristics, and results of patient-reported outcomes (PRO) screening (of depression, anxiety, fatigue, health-related quality of life, quality of life, and Top Problems).

Design:

Retrospective observational cohort study design.

Methods:

Processes and structure around psychology integration are described. Descriptive data obtained via retrospective chart review (IRB approved) are presented on patient sociodemographic factors, psychiatric medication and psychotherapy use, and results of PRO screenings with NTM-LD patients anticipated to start NTM antibiotic treatment or already on treatment. Relationships between variables were examined using nonparametric statistics.

Results:

From 2020 to 2024, 175 patients with NTM-LD were screened. Patients were on average 65.7 ± 9.8 years old, female (74.2%), white (91.4%), and on Medicare (69.1%). On average, this group experienced a moderate degree of socioeconomic disadvantage; 94.9% of patients lived in areas with a mental health provider shortage, and 42.3% lived in medically underserved areas. Patients reported considerable rates of mild or higher depression (54.3%) and anxiety (32.0%). Many utilized psychiatric (52.6%) or pain (20.6%) medications, while engagement in psychotherapy was low (5.1%). Patients reported impacts on quality of life, fatigue, and health-related quality of life, and the most common Top Problems were: “Shortness of breath, Breathlessness, Getting winded,” “Fatigue/Low energy,” and “Cough/Choking.”

Conclusion:

A licensed psychologist was successfully integrated into the NTM program. The disparity between PRO results and psychotherapy engagement highlights a key opportunity for mental health interventions. Integrated psychological services may provide streamlined access to mental healthcare.

Keywords

lung diseases mental health nontuberculous mycobacteria quality of life

Introduction

Nontuberculous mycobacteria (NTM) are environmental organisms found in soil, water, and dust—exposure to these mycobacteria in daily life is common. These bacteria can lead to significant infections in the lungs for people of all ages, though compromised immunity or underlying lung disease increases infection risk.¹ NTM lung disease (NTM-LD) is a progressive disease that occurs when these bacteria persist in the airways and incite an inflammatory response, causing long-term damage. The incidence of NTM infections is increasing in the United States² and worldwide.³

People with NTM-LD present with clinical symptoms including chronic cough, shortness of breath, fatigue and low energy, sleep problems, dyspnea, night sweats, loss of appetite, weight loss, hemoptysis, brain fog, and other symptoms.⁴ Many people have symptoms for several years before a formal diagnosis is made. Individuals may experience major impacts from this “invisible disorder”⁵ on daily activities, work, social relationships, emotions, and perceptions of the future.⁵ The treatment for NTM-LD (multidrug antibiotic regimens lasting many months) is time-, cost-, and effort-intensive and can cause side effects that are difficult to tolerate. Patient-reported side effects include nausea, neuropathy, numbness, vertigo, hearing loss, optic nerve damage or vision loss, sensitivity to stimuli, and acid reflux.⁵

There is increasing evidence that people with NTM-LD may have increased psychological symptoms of distress over time as they deal with the long-term disease, treatment, and medication side effects.^4,6 Powerful descriptions of patient experiences of living with NTM and its treatment are summarized in The Voice of the Patient, a report from a meeting by the U.S. Food and Drug Administration’s Patient-Focused Drug Development Initiative on NTM Lung Infection in 2015.⁵ For instance, one person with NTM-LD described coughing at night like she is “drowning in mucus and can’t swallow,” and others described fatigue as feeling “tired to your core,” or, “walking through molasses.”⁵ These qualitative descriptions bring richness and nuance to research reports in the literature, indicating elevated rates of psychological symptoms and quality of life impacts in people with NTM-LD.

Research has demonstrated a high prevalence of anxiety and depression among individuals living with NTM lung disease, but studies in US samples are limited. The European NTM-PD Patient Disease Experience (ENPADE) survey of 543 people with NTM-LD across eight European countries found that a majority (82%) of patients surveyed reported increased depression or anxiety, 68% reported increased nervousness, and patients also reported decreased self-confidence, body image, and the willingness to perform activities due to NTM-LD.⁷ Other research on psychological outcomes of people with NTM-LD has occurred predominantly in Asian countries, with differing results based on the sample, country, and the measure used.^2,6,8
–11 Reported rates of depression range from 18.8%⁸ to 53.5%,¹¹ and rates of anxiety range from 22.8%¹⁰ to 34.2%.¹¹ Published rates are higher than in the general US population¹² and are comparable to or higher to prevalence of anxiety and depression in other chronic pulmonary disease samples (e.g., cystic fibrosis¹³ or COPD¹⁴).

Decreased motivation, fatigue/low energy, and other psychological challenges may lead to feelings of overwhelm or difficulty with consistently following demanding schedules of multiple antibiotic medications. People with depression or anxiety may find the demands of the NTM-LD care routine to be more distressing. For example, a conference abstract presented results of one study of people with NTM-LD (N = 226) who were classified into a “healthy group” and a group reporting anxiety and depression symptoms; there was a significantly higher rate of adverse drug reactions reported by those patients with anxiety/depression versus the healthy group (64% vs 42%).¹⁵ Adverse drug reactions that can arise from long-term antibiotic treatment can contribute to psychological distress and/or negatively impact a patient’s willingness or ability to continue with their prescribed medications or ability to attend clinic visits. Elevated distress may also confer greater risk for worse morbidity and mortality.¹⁶

Despite the clear physical challenges posed by NTM-LD, the psychological toll it takes on patients is a critical aspect that often remains underrecognized and undertreated. There is a need for increased awareness and support; addressing mental health will likely not only improve the patient experience and quality of life, but also adherence to treatment and overall disease management. Indeed, a holistic care model for NTM, including increased support for psychological challenges and quality of life, has been highlighted as a priority for this population,^4,7 but presently, psychological support is not a widespread service available to patients with NTM-LD. Integrated models of psychological care have been applied in lung transplantation, cystic fibrosis (CF), COPD, and other chronic medical conditions.^17
–23

In 2020, our multidisciplinary NTM program incorporated a psychologist to provide services to improve the quality of life and mental health challenges of people being treated for NTM infections. Here, we describe the development of this clinical program and report on the characteristics of this sample of patients with NTM-LD who completed patient-reported outcome (PRO) screening in our program using a retrospective observational cohort design. We aimed to better understand the experiences of our patients anticipated to be starting (or already on) NTM antibiotic treatment in this report by examining PRO screening results, current pharmacological and nonpharmacological mental health interventions, and associations with sociodemographic outcomes obtained by retrospective chart review.

Methods

Program description and setting

The NTM program is in the southeastern United States and serves a large and growing population of adults with NTM infections. The program is staffed by a multidisciplinary team of clinicians (pulmonary, infectious disease), nurse coordinators, respiratory therapists, a pharmacist, and a registered dietitian. In 2020, a psychologist joined the team to provide integrated care within the NTM clinic, similar to the institution’s CF program.¹³ Patients are seen in an outpatient hospital clinic by the multidisciplinary team for in-person and telemedicine visits. The multidisciplinary team has regular rounds/meetings to discuss patient care.

Participant characteristics and sample

Data presented focuses on adult patients meeting with the licensed psychologist from 2020 to 2024 who had NTM-LD and were anticipated to be starting on NTM antibiotic therapies or who were new to the clinic and already on NTM antibiotic therapies. The licensed psychologist was in all scheduled clinics except for sick or annual leave, and screening was not completed in those instances due to staffing limitations. All efforts were made to meet with all eligible patients to reduce bias in the sample (though there were times patients were scheduled for non-clinic days or via telemedicine, in which cases screening was not completed). Inability to complete screening was not tracked. Inclusion criteria were being an adult—18 years and up, being diagnosed with NTM-LD based on clinician assessment, either being on or starting antibiotic treatment for NTM-LD, and present in clinic (not telemedicine), and being willing/able to complete screening. Patients were ineligible for screening due to not meeting diagnostic criteria for NTM infection, having extrapulmonary or disseminated disease, not initiating treatment, or being unable to complete the screening measures (e.g., dementia, blindness, and feeling “too sick”). Data from all records of patients who completed screening from 2020 to 2024 were extracted, and due to the descriptive nature of the study, a power analysis was not completed.

Services and procedures

In the outpatient clinic, patients are seen by the multidisciplinary team. Patient visits generally occur in person, with a small number of patients scheduled for telemedicine visits due to various considerations (need for testing during visit, distance from clinic, etc.). When they arrive, patients first undergo testing as indicated (computerized tomography scans, pulmonary function tests, etc.), are triaged by nursing staff, and then meet with the medical provider. The provider gives an overview of the multidisciplinary program and conducts their medical visit with the patient. For patients who are either on NTM antibiotics or starting new antibiotic treatment regimens, the patient will then meet with the PharmD, respiratory therapist, and psychologist, as well as the dietitian, as indicated.

The psychologist started meeting with patients in the NTM clinic in 2020 to provide education about mental health and potential resources and services, and to conduct brief psychosocial assessments and interventions. An additional focus was to perform PRO screenings with patients with NTM-LD who were anticipated to be starting on NTM antibiotic therapies or who were new to the clinic and already on NTM antibiotic therapies. These patients were specifically targeted for additional support, given the elevated burdens of NTM therapies. The psychologist also provided services to other patients seen in the clinic, including those patients with NTM not starting therapy and those with extrapulmonary or disseminated NTM infections, but these are not the focus of this manuscript.

Patients were invited to complete secure web-based adaptations of PRO measures (see below for a description of measures in the section, PRO screening domains and measures) and were asked questions about current and historical mental health symptoms and treatment. Patients with a need for additional support due to difficulty with using computer technology or lack of appropriate eyewear were read the items. Patients who met the inclusion criteria were approached for screening. After screening, the psychologist reviewed the specific scores with all patients, and all individuals received an interpretation of the results and recommendations based on scores. This was always conducted in person at the time of the visit, immediately following screening. The psychologist provided a range of interventions, including supportive interventions; psychoeducation on stress management, depression, and anxiety; personalized goal setting around quality of life; and identification of personalized coping strategies following screening. Initiation of psychiatric medications and/or referral for psychiatry was also considered. The providers and pharmacist (PharmD) collaborated on a prescribing protocol for patients who were amenable to starting psychiatric medications in clinic—they determined that they would prescribe first and second trials of psychiatric medications (non-controlled) for depression or anxiety, but additional trials and/or need for controlled substances, or treatment of serious mental illness would be referred to psychiatry. Individuals requesting further evaluation or intervention were referred to appropriate services either at the academic medical center in the specialty behavioral medicine clinic or locally in their community. Any discussion of suicidal ideation led to further safety assessment and planning with the team psychologist (item 9 of PHQ was not administered based on a priori team decision-making).

Research approach, design, and ethical approval

The study utilized a retrospective observational cohort design. Data extracted from the medical record included demographics (e.g., age, sex assigned at birth, race and ethnicity, and marital status), health insurance status, concomitant medications, body mass index (BMI), and pulmonary function (forced expiratory volume at one second percent predicted (ppFEV₁)). A review of mental health history and current status was documented in the patient’s medical chart during visits with the psychologist (current psychiatric medications, pain medications, and engagement in therapy), and this data was extracted.

Measures

Sociodemographic factors

We defined classifications of where patients resided based on rurality using the Health Resources and Services Administration (HRSA) definition of population density²⁴ and how their neighborhood was ranked for socioeconomic disadvantage using the Neighborhood Atlas’s Area Deprivation Index (ADI).^25,26 The ADI ranks neighborhoods by socioeconomic disadvantage based on factors such as income, education, employment, and housing quality; higher scores equate to greater disadvantage. We also assessed their place of residence in terms of being a Health Professional Shortage Areas (HPSAs) or Medically Underserved Areas (MUAs). HRSA designations used for HPSA ratings are defined as the number of health professionals needed relative to the population, given their health care needs.²⁷ MUAs are defined as areas where there is a lack of access to health to primary care services.²⁷

PRO screening domains and measures

Depression: The Patient Health Questionnaire (PHQ-8)²⁸ is an eight-item self-report measure of depression symptoms in the past two weeks, plus one item asking about impairment; it has good reliability and validity.^28,29 Each item is scored 0–3, providing an overall score of 0–27, with higher scores indicating higher levels of depression symptoms. Scores yielded can be categorized by depression severity. The following cut-offs were used, with scores of 0–4 indicating “No/Minimal” symptoms, 5–9 “Mild” symptoms, 10–14 “Moderate” symptoms, and 15+ indicating “Severe” symptoms.

Anxiety: The Generalized Anxiety Disorder-7 (GAD-7)³⁰ is a seven-item self-report measure of anxiety symptoms in the past two weeks, plus one item on impairment; it also has good reliability and validity.^30,31 Each item is scored 0–3, providing an overall score of 24. Scores yielded can be categorized by anxiety severity, and the same cut-offs for the PHQ-8 were used.

Fatigue: The PROMIS Fatigue Short-Form-4 (PFSF-4) Fatigue 4a – Adult v1.0³² is a universal assessment of fatigue for adults in the past 7 days (each item has five response options ranging in value from 1-5 to indicate frequency of the symptom in the past week).³² Scores are summed and then transformed into T-scores compared to a reference sample (general population) with means of 50 and standard deviations of 10.

Health-related Quality of Life (HRQOL): The Bronchiectasis Health Questionnaire (BHQ) is a 10-item, brief, valid, and repeatable health-related quality of life questionnaire designed for bronchiectasis³³ with applicability to people with NTM, given the symptoms assessed. “Your lung condition” was substituted for bronchiectasis. Ten questions ask for a 2 week recall for symptoms (fatigue, short of breath, coughing fits, hemoptysis, clear chest, and anxious) and function/impacts (slower at doing things, sleep disrupted, embarrassed because of sputum), and a final question asks about frequency of antibiotic treatment during the prior 12 months. The BHQ generates an overall health status score on a seven-point Likert scale using a scoring program from the test developer. Total scores were calculated with a logit transformation of raw responses and then transformed to a range of 0–100 (100 indicating the best health status).³³ To compare our sample’s scores to an existing sample of patients with bronchiectasis alone, T-scores were calculated from the BHQ total calculated score (T = 50+10 × (x–M)/SD), using the mean ± standard deviation (60.0 ± 11.9) from the original validation study (Spinou et al).³³ T-scores ⩽35 were considered to be significantly lower than the validation sample, and T-scores 36–40 were considered low compared to the BE normative sample.

Perception of Health: Patients also completed the PROMIS single-item general self-rated health question drawn from the PROMIS Global Health Short Form v1.0 (global01 item)³⁴ to assess health status, or how people perceive their health. Patients were asked: “In general, would you say your health is:. . .” and ratings are 1 “Poor” to 5 “Excellent.”

Quality of Life: A single item was administered to assess overall perceived quality of life (QOL). This item is adapted from the single-item global QOL scale for adult patients with CF (0 “Worst” to 10 “Best” in the past 2 weeks).³⁵ This item was adapted to fit this population by substituting “your lung condition” for CF (“Please rate how your lung condition has affected your QUALITY OF LIFE × over the last 2 weeks, on this scale: From 0 – the worst it has ever been, to 10 – the best it has ever been”).

Top Problems: For idiographic assessment of the physical problems that were most bothersome to patients, a novel adaptation of the Top Problems Assessment was used.³⁶ Patients were provided with the prompt: “We want to make sure we understand the health concerns that are most important to you right now. How would you describe the symptoms you would like to see improve, using your own words? What are the symptoms that are causing problems for you?” Patients were encouraged to describe their most impactful problems in their own words. Once the top three problems were identified, the patient was asked: “Now I would like for you to rate each of these problems on a scale from 0 to 4, where: 0 = not a problem at all and 4 = a very big problem.” This allowed for both subjective responses about problems unique to each patient, as well as a numerical score on severity. These Top Problems were then categorized based on thematic similarity, and illustrative patient quotes were selected.

Data preparation and analysis plan

Once extracted from patient charts, data were examined for missing values, and the assessment of the quality of missing data used appropriate methods, including Little’s MCAR test. Multiple imputation was utilized using pooled values after being determined to be appropriate based on missing data assessment. Data were examined for whether they met the assumptions of statistical tests, and appropriate parametric or nonparametric tests were used to describe the sample and relationships between the PROs and other variables extracted, as well as whether patient experiences differed on and off antibiotic treatment.

Results

Data analysis and missing data

Extracted data were examined for missing values. There were no missing values on sociodemographic variables. A small percentage (2.4%) of values were missing on PRO measures completed by patients and were determined to be missing completely at random via Little’s MCAR test; multiple imputation was thus appropriate. Multiple imputation (five iterations) was deemed appropriate to address missing data; pooled values were used to examine the data. Data were examined for assumptions met for statistical tests, and descriptive and nonparametric statistics, as appropriate, were utilized to describe the sample and relationships between the PROs and variables of interest, as well as whether patient experiences differed on and off antibiotic treatment. STROBE³⁷ cross-sectional reporting guidelines were used in manuscript preparation.

Sociodemographic, medical, and mental health treatment variables

One hundred seventy-five patients with NTM-LD (either on or starting antibiotic treatment) were screened by the licensed psychologist. 100% of patients screened received feedback from the psychologist in person in the clinic. Patients not screened were either not meeting diagnostic criteria for NTM infection, had extrapulmonary or disseminated disease, or were not initiating treatment. Descriptive patient data are summarized in Table 1. Patients screened were on average 65.7 ± 9.8 years old (range: 21–83 years old). The cohort was predominantly female and white. Most patients were married or partnered. Mean BMI was 22.8 ± 5.8 (range: 10.5–45.5) and mean ppFEV₁ was 68.6 ± 21.0% (range: 18%–121%). Most patients had Mycobacterium avium complex (MAC; n = 84, 48%), M. avium intracellulare (MAIC, n = 35, 20%), or M. abscessus (n = 33, 18.9%), with the remainder having Other/Multiple NTM species (n = 23, 13.1%). Mental health treatment utilization was high in terms of pharmacotherapy, as 52.6% of patients were taking psychiatric medications, and 20.6% were on medications for pain. However, only 5.1% of patients were engaged in any form of counseling or psychotherapy at the time of screening.

Table 1.

Sociodemographic, medical, and mental health treatment variables (N = 175).

Variable	n (%)
Sex
Female	130 (74.2)
Male	45 (25.7)
Race
Non-white	15 (8.6)
White	160 (91.4)
Relationship status
Married/partnered	125 (71.4)
Not married/partnered	50 (28.6)
NTM antibiotic treatment status
Not on treatment	106 (60.6)
On antibiotics for NTM	69 (39.4)
Rurality
Living in rural area	40 (22.9)
Not in rural area	135 (77.1)
Mental health professionals serving patient’s residential area
Adequate for population needs	9 (5.1)
Mental health HPSA (Health Professional Shortage Area)	148 (84.6)
Mental health High-Needs Geographic HPSA	18 (10.3)
Primary care professionals serving patient’s residential area
Adequate for population needs	86 (49.1)
Primary care Health Professional Shortage Area (HPSA)	84 (48.0)
Primary care High-Needs Geographic HPSA	5 (2.9)
Patients residing in medically underserved areas (MUAs)
Yes, in area with lack of access to primary care services	74 (42.3)
No, adequate access to primary care services	101 (57.7)
Mental health treatment—current status
On psychiatric medications	92 (52.6)
On medications to manage pain	36 (20.6)
Engaged in psychotherapy/counseling	9 (5.1)

Most patients had primary insurance types of Medicare (69.1%, n = 121) or private insurance (27.4%, n = 48), with the remaining 3.4% having Medicaid (n = 3), Tricare (n = 1), or Veterans Affairs funding (n = 2) as primary. Thirty-three percent (n = 57) of patients did not have supplemental insurance in addition to their primary.

In terms of neighborhood socioeconomic disadvantage, the state-level ADI deciles ranged from 1 to 10, showing the full range of advantage/disadvantage (mean of 3.16 ± 2.4); national ADI percentiles ranged from 1 to 98 also showing a full range of advantage/disadvantage compared to national data (mean of 44.1 ± 24.8), indicating a moderate degree of socioeconomic disadvantage across the sample. Three patients did not have ADI deciles or percentiles available due to data being “suppressed due to high group quarters population” (i.e., a block group has a high proportion of residents living in group quarters, e.g., retirement community; data suppressed to protect individual confidentiality).

Access to healthcare providers was also limited in many areas where our patients resided at the time of screening. Most patients (84.6%) lived in Mental Health Professional Shortage Areas (HPSAs), and an additional 10.3% lived in high-needs geographic mental health HPSAs, with only 5.1% of the sample having adequate access to mental health professionals in their area of residence. Nearly half (48.0%) resided in Primary Care HPSAs, and 42% resided in areas designated as medically underserved.

Patient-reported outcomes

Table 2 provides categorical results on PRO screening measures. Twenty-one percent (n = 36) of patients reported depression symptoms in the moderate-to-severe range, with the overall average score being in the mild depression range (PHQ-8 Mean = 6.1 ± 4.7). Ten percent of patients (n = 18) had anxiety symptoms in the moderate-to-severe range (GAD-7 Mean = 3.5 ± 3.9).

Table 2.

PRO screening categorical results.

Variable	n (%)
Depression (PHQ-8)
Minimal/normal (0–4)	80 (45.7)
Mild (5–9)	59 (33.7)
Moderate (10–14)	25 (14.3)
Severe (15+)	11 (6.3)
Impairment/difficulty due to depression symptoms
Not difficult at all	77 (44.0)
Somewhat difficult	74 (42.3)
Very difficult	11 (6.3)
Extremely difficult	13 (7.4)
Anxiety (GAD-7)
Minimal/normal (0–4)	119 (68.0)
Mild (5–9)	38 (21.7)
Moderate (10–14)	15 (8.6)
Severe (15+)	3 (1.7)
Impairment/difficulty due to anxiety symptoms
Not difficult at all	110 (62.9)
Somewhat difficult	54 (30.9)
Very difficult	9 (5.1)
Extremely difficult	2 (1.1)
Fatigue (PFSF-4)
Significantly Elevated (T⩾65)	48 (24.7)
Normal (T < 65)	128 (73.1)
Health-related Quality of Life (BHQ)³³
Significantly Low (T ⩽ 35) compared to BE validation sample	5 (2.9)
Low (T 36–40) compared to BE validation sample	19 (10.8)
Similar (T > 40) compared to BE validation sample	151 (86.3)
Perceptions of health (GSRH)
Poor	31 (17.7)
Fair	45 (25.7)
Good	58 (33.1)
Very Good	35 (20.0)
Excellent	6 (3.4)
Quality of life (Single-item QOL)
Low (0–3)	46 (26.2)
Moderate/neutral (4–6)	73 (41.7)
High (7–10)	56 (32.0)

BHQ, Breathing Health Questionnaire; GAD-7, Generalized Anxiety Disorder-7; GSRH, General Self-Rated Health Item; PFSF-4, PROMIS Physical Function Short Form; PHQ-8, Patient Health Questionnaire-8; QOL, Single-item Quality of Life measure.

One-quarter (24.7%, n = 48) of patients reported significantly elevated fatigue compared with average adults (T ⩾ 65; Mean PFSF-4 T-scores 55.5 ± 12.3). Patients overall viewed their health as fair-to-good (Mean GSRH 2.7 ± 1.1) and had a neutral perspective on their overall quality of life (Mean QOL 5.0 ± 2.7). Nonetheless, a notable proportion of patients reported Poor overall health (17.7%) and low QOL (26.2%). When comparing this sample’s HRQOL scores on the BHQ to the validation BHQ sample of patients with bronchiectasis (BE) alone, the scores of our patients were on average lower (T-score Mean = 48.5 ± 7.4, range 30.3–66.3), indicating that our sample of patients reported lower HRQOL compared to the validation BHQ sample of patients with bronchiectasis (BE) alone albeit not significantly so. A subset of 13.7% of patients with NTM-LD in our sample experienced a significantly lower HRQOL than the patients with bronchiectasis alone from the BHQ normative sample.

Correlational relationships are summarized in Table 3. Higher lung function was associated with higher ratings of overall health (p = 0.007). Age and BMI were not significantly correlated with other factors. There were significant relationships between many of the PRO measures. Higher fatigue was associated with higher depression (p < 0.001) and anxiety (p < 0.001), and lower QOL (p < 0.001), perceptions of health (p < 0.001), and HRQOL (p < 0.001) on the BHQ. Lower QOL was associated with higher depression (p < 0.001) and fatigue scores (p < 0.001), and lower HRQOL (p < 0.001) and perceptions of health (p < 0.001), but was not significantly related to anxiety scores.

Table 3.

Spearman’s rank-order correlations between variables.

Variable	1	2	3	4	5	6	7	8
1. Age	—
2. BMI	−0.07	—
3. FEV1%pred	−0.06	0.06	—
4. PHQ-8 Total	−0.02	−0.04	−0.05	—
5. GAD-7 Total	−0.14	0.05	−0.06	0.58**	—
6. PFSF-4 T-score	−0.07	−0.06	0.03	0.79**	0.37**	—
7. BHQ T-score	−0.02	0.03	0.07	−0.70**	−0.38**	−0.69**	—
8. GSRH	0.03	0.00	0.20**	−0.46**	−0.24**	−0.53**	0.58**	—
9. QOL	0.06	−0.00	0.07	−0.40**	−0.10	−0.49**	0.61**	0.44**

Spearman’s ρ reported. *p < 0.05, **p < 0.01.

BHQ, Breathing Health Questionnaire; BMI, Body Mass Index; FEV1%pred, Forced Expiratory Volume in 1 second (% of predicted); GAD-7, Generalized Anxiety Disorder-7; GSRH, General Self-Rated Health Item; PFSF-4, PROMIS Physical Function Short Form; PHQ-8, Patient Health Questionnaire-8; QOL, Single-item Quality of Life measure.

Independent-Samples Mann–Whitney U Tests were conducted to examine whether patients starting NTM antibiotic treatment (n = 106) differed on PROS from patients already on antibiotic treatment (n = 69). Results indicated that there was no significant difference between those on NTM antibiotic treatment and those not on treatment on depression, fatigue, HRQOL, or overall QOL (p’s > 0.05). However, there was a significant difference in anxiety; the median GAD-7 score was 3.0 (interquartile range (IQR) = 5.1) in those not on NTM treatment, and 1.0 (IQR = 4.4) in those on treatment (Mann–Whitney U = 2929.6, p = 0.025). The median GSRH (perception of health, high score is better) was 3.0 (IQR = 1.9) in those not on treatment and 1.8 (IQR = 2.4) for those on treatment (Mann–Whitney U = 3000.7, p = 0.039). That is, those on treatment reported fewer anxiety symptoms but perceived their general self-rated health to be lower.

Discussion

A screening program focusing on patients starting antibiotics or already on treatment for NTM-LD revealed a high burden of mental health symptoms—over half had mild or higher depression scores, and one-third had mild or higher anxiety scores. Strikingly, only 5% of patients were engaged with any form of psychotherapy at the time of screening, highlighting an unmet need in this population. Depression symptoms were associated with impaired perceptions of health, overall QOL, and HRQOL. In our patient sample, 13.7% had significantly lower HRQOL than the normative sample of individuals with bronchiectasis.³³ There may be an added burden associated with NTM-LD that is experienced less commonly among people with bronchiectasis alone. Caveats are that the BHQ was not validated in patients with NTM-LD, and, while all patients in our sample had NTM-LD, not all had bronchiectasis. Treating depression when it is present has important implications for individuals’ assessment of their own well-being, and future work should focus on whether depression in people with NTM, as in other conditions,¹³ impacts adherence to complicated medical regimens.

Many people with NTM in this cohort lived in MUAs, and most were on Medicare; there are financial and care access implications of these characteristics. For individuals on Medicare A&B without supplemental insurance, in-clinic IV infusions are covered, but home IV infusions may not be covered; further, Medicare Part D is required for prescription coverage. For individuals on Medicare, certain specialty medications used to treat NTM (e.g., amikacin liposome inhalation suspension and omadacycline) require a 20% copay, which can evolve into a significant financial burden, and copay cards are not available when on government-funded insurance. Accessing financial and community resources and supports for this older adult population living in moderately socioeconomically disadvantaged areas may be challenging and contribute to overall stress, highlighting the need for social work and case management support above and beyond mental health services. While our goal in this study was to better understand our unique patient population, these sociodemographic factors may also impact the generalizability of our findings to other NTM patient populations.

The rates of mental health symptoms in our patient population are aligned with findings of others studying other NTM-LD populations and are substantially higher than the general population.¹² Our sample had higher rates of pharmacotherapy for mental health (52.6%) than the general population of adults in the US aged 45–64 (where 17.7% were taking medication for mental health), and those 65 and over (17.3%).^12,38 However, only 5% of our study population was engaged in any form of psychotherapy at the time of study screening, representing a marked underutilization of nonpharmacological mental health interventions. A striking finding was that 95% of our patients were living in areas without adequate numbers of mental health professionals, highlighting that there may be a challenge for many patients in accessing mental health support. Integrated psychological care models are well-positioned to both provide mental health care and assist individuals in connecting with other mental health treatment options (e.g., telemedicine).

The high burden of mental health symptoms, underutilization of nonpharmacologic mental health support, limited access to mental health support in patients’ communities, and the fact that psychological interventions are well-suited to treat anxiety, depression, and many of the patient-identified Top Problems underscore the potential role of integrated psychological care in NTM clinics. Psychological interventions delivered in brief in a clinic, or via more formal psychological care mechanisms in long-term therapy, have the potential to improve well-being and QOL. Shortness of breath, fatigue, and cough were the Top Problems impacting our study patients, and their narratives provided an important illustration of personal experiences. There are opportunities for psychological interventions to provide treatment and palliation of these symptoms (e.g., coping with dyspnea-related anxiety). There are several psychological interventions (Table 5) that may have utility in people with NTM-LD, and systematic efficacy evaluations are warranted. There is potential utility for telemedicine-delivered therapy or other mobile health interventions (e.g., apps) to improve this population’s access to nonpharmacological mental health interventions via mental health apps or other mechanisms, though there may be unique cohort considerations around technology use for older adults.³⁹ On the other hand, there is evidence that, compared with working-age adults, older adults respond more favorably to psychological intervention for depression and anxiety and have less attrition from treatment.⁴⁰

Table 5.

Example psychological interventions with potential utility for NTM-LD.

Top problem area	Example psychological interventions*
Respiratory symptoms	— Brief Cognitive and Behavioral Intervention for the Management of Episodic Breathlessness⁴¹ — The COPD Breathlessness Manual⁴²
Fatigue and physical functioning	— Graded Exercise Therapy (GET) for fatigue^43,44 — Cognitive Behavioral Therapy (CBT) for fatigue⁴⁴ — CBT for chronic pain⁴⁵ — Acceptance and Commitment Therapy (ACT) for chronic pain⁴⁶ — Motivational interviewing to increase physical activity⁴⁷
Psychological and cognitive concerns (Including depression and anxiety)	— CBT and ACT for depression and anxiety (co-occurring in chronic illness)^48,49 — Transdiagnostic therapy for emotional disorders⁵⁰ — CBT for Insomnia⁵¹
Nutritional and GI issues	— CBT for a) irritable bowel syndrome symptoms such as diarrhea, b) functional dyspepsia/early satiety, or c) food avoidance/anxiety^52 –54
Treatment-related burden	— CBT or Acceptance and Commitment Therapy to manage distress related to long-term regimens and treatment nonadherence^55,56 — Motivational interviewing to support treatment adherence⁵⁷

This list is illustrative and not comprehensive. These interventions have not been tested in people with NTM-LD.

Pravosud et al. (N = 266) reported on differences between those who were and were not taking medications to treat their NTM-LD, with significantly higher rates of feelings of sadness or depression related to illness for those on antibiotics (65.5%) compared to those who were not (42.5%).⁶ Anxiety was not specifically measured in this study. Interestingly, in our cohort, those on NTM antibiotic treatment reported fewer anxiety symptoms, and no significant difference in depression from those not on treatment, but also perceived their overall health to be poorer. Patients may experience a complex adjustment process when starting on NTM medications, where having a “diagnosis” and “treatment” is reassuring, but also learning the challenging outcomes of NTM or treatment side effects may lead to reduced perceptions of health. A better understanding of the experience of patients on and off NTM treatment is needed.

Our study has several limitations. We included only people who were on or starting antibiotic treatment for NTM-LD and did not evaluate the population of our clinic undergoing “watchful waiting” medical monitoring off antibiotics. As an NTM-LD regional referral center, our patient population may differ from those seen by local providers and not referred for NTM specialty care. We also did not take into account diagnoses outside of NTM-LD or other comorbidities that may affect patient experiences and mental health. Our study was cross-sectional, and thus we lack longitudinal measurements and information about outcomes of screening recommendations. We also focused on a descriptive design, and hypothesis testing was not the primary goal; as such, power analyses were not completed to determine what sample size would be needed to detect statistically significant effects. These findings may be most usefully viewed as a preliminary investigation to inform future prospective research on the experiences of people living with NTM-LD. Having one psychologist for a clinic presented certain logistical/resource challenges. Notably, the psychologist was unable to screen all patients seen (e.g., those seen by telemedicine consistently due to being too sick to travel to the clinic, those presenting to clinics on days the psychologist was not scheduled to be present—out sick, two patients scheduled at the same time needing screening). It is possible that these factors could have impacted the rates of mental health symptoms noted herein. Lack of completion of screening could not be tracked, which may be improved upon with additional staffing. Further, the determination was made to use the PHQ-8 versus -9 based on resources; while universal screening of suicide risk in medical settings may lead to potential benefits of early detection, it is infeasible to provide adequate follow-up if resources are not available.⁵⁸

These considerations highlight the potential benefit of cross-training or increasing staffing dedicated to these screenings in the future. A comprehensive screening protocol completed by multiple staff would allow for full assessment of all patients across all clinic days and times. However, expanding psychology service availability in the NTM program would also be necessary to broaden the scope of services available for follow-up and treatment, to address these limitations. Lastly, while we gathered important qualitative data from patients on their Top Problems, our findings are limited by not having patient-satisfaction scores around PRO screening and the availability of psychological services. Future work should assess these important indices of acceptability within our program’s model to ensure we are continuing to support patient-centered care. Generally, similar types of screening programs have been found to be very well received, acceptable, and perceived as helpful in studies examining patient satisfaction in other samples screened for mental health in medical settings, such as people with CF⁵⁹ and older adults.⁶⁰ However, further study of the generalizability of our findings, as well as patient satisfaction with our program, is indicated.

Conclusion

Patients with NTM-LD screened in our program described substantial burdens of depression, anxiety, and fatigue, as well as QOL impacts. The disparity between proportions using pharmacological versus nonpharmacological interventions for mental health support and the poor access to local mental health services highlight a critical gap in care. We were able to successfully integrate a licensed psychologist into the NTM multidisciplinary team, and doing so is the first step in bridging this gap toward more holistic, comprehensive, and effective care of people with NTM-LD.

Supplemental Material

sj-docx-1-tar-10.1177_17534666251394479 – Supplemental material for Integration of psychological care into a nontuberculous mycobacteria (NTM) program in the Southeastern United States: A retrospective cohort study

Supplemental material, sj-docx-1-tar-10.1177_17534666251394479 for Integration of psychological care into a nontuberculous mycobacteria (NTM) program in the Southeastern United States: A retrospective cohort study by Lillian M. Christon, Wendy Bullington, Lauren Sullivan, Patrick A. Flume, Susan Dorman, Yosra Alkabab, Brian Daigle, Brandie Taylor and Christina Mingora in Therapeutic Advances in Respiratory Disease

Footnotes

Acknowledgements

We are incredibly grateful to the people with NTM who trust us with their care. We continue to learn from you as we partner in your care.

Declarations

ORCID iD

Lillian M. Christon

Supplemental material

Supplemental material for this article is available online.

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Supplementary Material

Please find the following supplemental material available below.

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Integration of psychological care into a nontuberculous mycobacteria (NTM) program in the Southeastern United States: A retrospective cohort study

Abstract

Background:

Objectives:

Design:

Methods:

Results:

Conclusion:

Keywords

Introduction

Methods

Program description and setting

Participant characteristics and sample

Services and procedures

Research approach, design, and ethical approval

Measures

Sociodemographic factors

PRO screening domains and measures

Data preparation and analysis plan

Results

Data analysis and missing data

Sociodemographic, medical, and mental health treatment variables

Patient-reported outcomes

Top problems

Discussion

Conclusion

Supplemental Material

sj-docx-1-tar-10.1177_17534666251394479 – Supplemental material for Integration of psychological care into a nontuberculous mycobacteria (NTM) program in the Southeastern United States: A retrospective cohort study

Footnotes

Acknowledgements

Declarations

ORCID iD

Supplemental material

References

Supplementary Material