Deborah H. Boehm

Factors that lessen the burden of treatment in complex patients with chronic conditions: a qualitative study

Purpose Patients with multiple chronic conditions (multimorbidity) often require ongoing treatment and complex self-care. This workload and its impact on patient functioning and well-being are, together, known as treatment burden. This study reports on factors that patients with multimorbidity draw on to lessen perceptions of treatment burden. Patients and methods Interviews (n=50) and focus groups (n=4 groups, five to eight participants per group) were conducted with patients receiving care in a large academic medical center or an urban safety-net hospital. Interview data were analyzed using qualitative framework analysis methods, and themes and subthemes were used to identify factors that mitigate burden. Focus groups were held to confirm these findings and clarify any new issues. This study was part of a larger program to develop a patient-reported measure of treatment burden. Results Five major themes emerged from the interview data. These included: 1) problem-focused strategies, like routinizing self-care, enlisting support of others, planning for the future, and using technology; 2) emotion-focused coping strategies, like maintaining a positive attitude, focusing on other life priorities, and spirituality/faith; 3) questioning the notion of treatment burden as a function of adapting to self-care and comparing oneself to others; 4) social support (informational, tangible, and emotional assistance); and 5) positive aspects of health care, like coordination of care and beneficial relationships with providers. Additional subthemes arising from focus groups included preserving autonomy/independence and being proactive with providers. Conclusion Patients attempt to lessen the experience of treatment burden using a variety of personal, social, and health care resources. Assessing these factors in tandem with patient perceptions of treatment burden can provide a more complete picture of how patients fit complex self-care into their daily lives.

Finalizing a measurement framework for the burden of treatment in complex patients with chronic conditions

Purpose The workload of health care and its impact on patient functioning and well-being is known as treatment burden. The purpose of this study was to finalize a conceptual framework of treatment burden that will be used to inform a new patient-reported measure of this construct. Patients and methods Semi-structured interviews were conducted with 50 chronically ill patients from a large academic medical center (n=32) and an urban safety-net hospital (n=18). We coded themes identifying treatment burden, with the themes harmonized through discussion between multiple coders. Four focus groups, each with five to eight participants with chronic illness, were subsequently held to confirm the thematic structure that emerged from the interviews. Results Most interviewed patients (98%) were coping with multiple chronic conditions. A preliminary conceptual framework using data from the first 32 interviews was evaluated and was modified using narrative data from 18 additional interviews with a racially and socioeconomically diverse sample of patients. The final framework features three overarching themes with associated subthemes. These themes included: 1) work patients must do to care for their health (eg, taking medications, keeping medical appointments, monitoring health); 2) challenges/stressors that exacerbate perceived burden (eg, financial, interpersonal, provider obstacles); and 3) impacts of burden (eg, role limitations, mental exhaustion). All themes and subthemes were subsequently confirmed in focus groups. Conclusion The final conceptual framework can be used as a foundation for building a patient self-report measure to systematically study treatment burden for research and analytical purposes, as well as to promote meaningful clinic-based dialogue between patients and providers about the challenges inherent in maintaining complex self-management of health.

Shared Decision Making in the Safety Net: Where Do We Go from Here?

Background: Shared decision making (SDM) is an interactive process between clinicians and patients in which both share information, deliberate together, and make clinical decisions. Clinics serving safety net patients face special challenges, including fewer resources and more challenging work environments. The use of SDM within safety net institutions has not been well studied. Methods: We recruited a convenience sample of 15 safety net primary care clinicians (13 physicians, 2 nurse practitioners). Each answered a 9-item SDM questionnaire and participated in a semistructured interview. From the transcribed interviews and questionnaire data, we identified themes and suggestions for introducing SDM into a safety net environment. Results: Clinicians reported only partially fulfilling the central components of SDM (sharing information, deliberating, and decision making). Most clinicians expressed interest in SDM by stating that they “selected a treatment option together” with patients (8 of 15 in strong or complete agreement), but only a minority (3 of 15) “thoroughly weighed the different treatment options” together with patients. Clinicians attributed this gap to many barriers, including time pressure, overwhelming visit content, patient preferences, and lack of available resources. All clinicians believed that lack of time made it difficult to practice SDM. Conclusions: To increase use of SDM in the safety net, efficient SDM interventions designed for this environment, team care, and patient engagement in SDM will need further development. Future studies should focus on adapting SDM to safety net settings and determine whether SDM can reduce health care disparities.

Healthcare provider relational quality is associated with better self-management and less treatment burden in people with multiple chronic conditions

Purpose Having multiple chronic conditions (MCCs) can lead to appreciable treatment and self-management burden. Healthcare provider relational quality (HPRQ) – the communicative and interpersonal skill of the provider – may mitigate treatment burden and promote self-management. The objectives of this study were to 1) identify the associations between HPRQ, treatment burden, and psychosocial outcomes in adults with MCCs, and 2) determine if certain indicators of HPRQ are more strongly associated than others with these outcomes. Patients and methods This is a cross-sectional survey study of 332 people with MCCs. Patients completed a 7-item measure of HPRQ and measures of treatment and self-management burden, chronic condition distress, self-efficacy, provider satisfaction, medication adherence, and physical and mental health. Associations between HPRQ, treatment burden, and psychosocial outcomes were determined using correlational analyses and independent samples t-tests, which were repeated in item-level analyses to explore which indicators of HPRQ were most strongly associated with the outcomes. Results Most respondents (69%) were diagnosed with ≥3 chronic conditions. Better HPRQ was found to be associated with less treatment and self-management burden and better psychosocial outcomes (P<0.001), even after controlling for physical and mental health. Those reporting 100% adherence to prescribed medications had higher HPRQ scores than those reporting less than perfect adherence (P<0.001). HPRQ items showing the strongest associations with outcomes were “my healthcare provider spends enough time with me”, “my healthcare provider listens carefully to me”, and “I have trust in my healthcare provider”. Conclusion Good communication and interpersonal skills of healthcare providers may lessen feelings of treatment burden and empower patients to feel confident in their self-management. Patient trust in the provider is an important element of HPRQ. Educating healthcare providers about the importance of interpersonal and relational skills could lead to more patient-centered care.

Validating the Patient Experience with Treatment and Self-Management (PETS), a patient-reported measure of treatment burden, in people with diabetes

Aims To validate a comprehensive general measure of treatment burden, the Patient Experience with Treatment and Self-Management (PETS), in people with diabetes. Methods We conducted a secondary analysis of a cross-sectional survey study with 120 people diagnosed with type 1 or type 2 diabetes and at least one additional chronic illness. Surveys included established patient-reported outcome measures and a 48-item version of the PETS, a new measure comprised of multi-item scales assessing the burden of chronic illness treatment and self-care as it relates to nine domains: medical information, medications, medical appointments, monitoring health, interpersonal challenges, health care expenses, difficulty with health care services, role activity limitations, and physical/mental exhaustion from self-management. Internal reliability of PETS scales was determined using Cronbach’s alpha. Construct validity was determined through correlation of PETS scores with established measures (measures of chronic condition distress, medication satisfaction, self-efficacy, and global well-being), and known-groups validity through comparisons of PETS scores across clinically distinct groups. In an exploratory test of predictive validity, step-wise regressions were used to determine which PETS scales were most associated with outcomes of chronic condition distress, overall physical and mental health, and medication adherence. Results Respondents were 37–88 years old, 59% female, 29% non-white, and 67% college-educated. PETS scales showed good reliability (Cronbach’s alphas ≥0.74). Higher PETS scale scores (greater treatment burden) were correlated with more chronic condition distress, less medication convenience, lower self-efficacy, and worse general physical and mental health. Participants less (versus more) adherent to medications and those with more (versus fewer) health care financial difficulties had higher mean PETS scores. Medication burden was the scale that was most consistently associated with well-being and patient-reported adherence. Conclusion The PETS is a reliable and valid measure for assessing perceived treatment burden in people coping with diabetes.