Identifying key domains of health-related quality of life for patients with chronic obstructive pulmonary disease: interviews with healthcare professionals

Abstract

Purpose The aim of this paper is to identify which domains of health-related quality of life (HRQoL) are most important for patients with chronic obstructive pulmonary disease (COPD), from the perspective of healthcare professionals (HCPs). Methods Thirteen Dutch HCPs [six pulmonologists, three pulmonology nurse practitioners, two physiotherapists and two general practitioners; 9 men; mean age 51.0 (SD = 10.6) years; mean years of experience 12.1 (SD = 7.2)] specialized in the field of COPD were recruited. The only inclusion criterion was that the HCP had to have extensive experience in treating COPD patients. The face-to-face interviews took 30-40 min.Results Physical health emerged as the most important theme from the spontaneous statements that HCPs made when asked about HRQoL in relation to COPD, closely followed by social health and coping with COPD-related complaints and restrictions. The most frequently selected PROMIS domains were fatigue, physical function, emotional support and depression. If the related domains satisfaction with participation in social roles and activities and ability to participate in social roles and activities were to be combined, it would come in second place after fatigue. Conclusion When comparing the domains chosen by HCPs to the ones chosen by patients in a recent study, there is a high degree of agreement, with the exception of depression. We argue that it is important to take into account both patient and HCP perspective when developing/selecting HRQoL instruments. Our results may be used to inform domain selection to measure HRQoL in patients with COPD, as well as instrument development.

Correlates and Predictors of Health-Related Quality of Life among Patients with COPD: An Integrative Review

“…These predictive factors were reported into five groups: demographic factors, comorbidity, factors related to the disease, psychological factors, and other related factors. HRQoL was comprised of several domains that involve physical, mental, and social wellbeing which significantly differs for each patient [10]. Impaired quality of life is closely related to shortness of breath, impaired physical activities, and mental problems such as; anxiety [17].…”

“…HRQoL and QoL are used interchangeably [9]. HRQoL is composed of various aspects that involve physical, mental, emotional, and social wellbeing, which is completely different for each patient [10]. Impaired quality of life among COPD patients is closely related to the symptoms of shortness of breath, dyspnea, and impaired physical activities, like fatigue, and mental problems, like anxiety [1] [11] [12].…”

“…The associated factors lead to a gradual deterioration in the HRQoL, such as: severity of disease symptoms, the impact of symptoms on the subsequent reduction in daily activities, non-adherence management, and therapeutic noncompliance and psychosocial effect [6]. The interest in the associated factors contributing to HRQoL among patients with COPD is increasing [10] [19]. The associated factors were classified in to sociodemographic and clinical variables, functional, psychological, and emotional among patients with COPD.…”

An Overview of the Patient‐Reported Outcomes Measurement Information System (PROMIS) for Assessing Chronic Low Back Pain Patients

“…When placed into a composite measure with other items for fatigue, factor analysis showed two factors of “energy” and “fatigue” (Deng, Guyer, & Ware, ). The fatigue domain was most frequently reported by healthcare professionals as being useful for chronic obstructive pulmonary disease (Paap, Bode, Lenferink, Terwee, & van der Palen, ).…”

Item usage in a multidimensional computerized adaptive test (MCAT) measuring health-related quality of life

“…Since health-related quality of life (HRQL) has taken a central role in the evaluation of treatment interventions in patients with chronic obstructive pulmonary disease (COPD), we recently developed a multidimensional CAT (MCAT) to measure HRQL in patients with chronic obstructive pulmonary disease (COPD) [ 13 ]. Following the steps outlined by Paap et al [ 14 ], we first established which domains of HRQL are most important to patients with COPD, using relevant literature (articles and existing questionnaires), as well as interviews with patients and HCPs [ 14 , 15 ]. Based on these findings, three generic domains/item banks from the PROMIS (Patient-Reported Outcomes Measurement Information System) framework were selected (fatigue, physical functioning, and ability to participate in social roles and activities) and a new COPD-specific domain/item bank (COPD-SIB) was developed [ 16 ].…”