State of the art and future directions in assessing the quality of life in rare and complex connective tissue and musculoskeletal diseases

Abstract

BackgroundAs chronic conditions, rare and complex connective tissue and musculoskeletal diseases (rCTDs) significantly affect the quality of life generating an impact on the physical, psychological, social, and economic dimensions of the patients’ lives, having implications on the family, changing the lifestyle and interpersonal relationships. Traditionally, generic and disease-specific measures for Quality of Life (QoL) provide valuable information to clinicians since QoL affects healthcare services utilization, predicts morbidities and mortalities, workability, etc. Moreover, the assessment of unmet clinical needs, satisfaction, the experience with the treatment and the care, the psychological dimensions, and the effects of the diseases, such as fatigue, could represent valuable dimensions to be considered in the QoL impact assessment. It is also necessary to measure the impact of rCTDs by considering the perspectives of family members/informal caregivers, for instance considering values, beliefs, experiences, life circumstances, psychological aspects, family relationships, economic issues, changes in social activities, etc.ObjectiveThe aim of this scoping review is to better understand the status of QoL metrics used in clinical and economic research for the assessment of the individual’s perspective on living with rCTDs.Research questionWhat are the main challenges in QoL measures (and/or) measurement/assessment in rCTDs?Materials and methodsScoping review of the literature referring to QoL measures in rCTDs. Database: PUBMED, ISI-Web of Science; last date: 21/09/2021.ResultsAnxiety and depression, body image satisfaction, daily activity, fatigue, illness perception, pain, personality, QoL, resilience, satisfaction with the relationship, self-management, sexual QoL, sleep quality, social support, stress, uncertainty, and work productivity are the observed dimensions covered by the included studies. However, “more shadows than lights” can summarize the review’s outcome in terms of Patient Reported Outcome Measures (PROMs) domains covered for each of the rCTDs. Also, for those diseases characterized by a relatively high prevalence and incidence, such as Systemic Lupus Erythematosus, Sjögren’s Syndrome, and Systemic Sclerosis, the analysis of patients’ resilience, satisfaction with the quality of the relationship, personality, and stress are still missing dimensions. It has been observed how reducing items, increasing the number of domains, and disease-specific questionnaires characterize the “technological trajectory,” such as the evolution of questionnaires’ characteristics for assessing QoL and QoL-related dimensions and the burden of rCTDs.ConclusionThe scoping review presents an overview of studies focused on questionnaires used to evaluate the different dimensions of quality of life in terms of general instruments and disease-specific questionnaires. Future research should include the co-design with patients, caregivers, and patient representatives to create questionnaires focused on the unmet needs of people living with rCTDs.

Telereabilitacijos Efektyvumas Skausmui, Gyvenimo Kokybei Ir Negaliai Esant Kaulų-Raumenų Sistemos Sutrikimams

“…Darbingo amžiaus asmenys dažniausiai patiria kaklo ir apatinės nugaros dalies skausmus, vyresni -įvairias sąnarių patologijas [1]. Dėl nuolatinio varginančio skausmo paveikiama asmens gyvenimo kokybė fizinėje, psichosocialinėje ir ekonominėje srityje, nukenčia šeiminiai ir tarpasmeniniai santykiai [3,4], o ilgainiui kaulų -raumenų sistemos sutrikimai sąlygoja žmogaus negalią [3].…”

The Role of Exercise to Improve Physiological, Physical and Psychological Health Outcome in Idiopathic Inflammatory Myopathies (IIM)

“…99 Several studies have reported a poorer health-related quality of life in patients with myositis compared with the general population. 46,[95][96][97][100][101][102][103][104][105][106][107][108][109] In 2016, a systematic review of 10 studies including 654 patients with IIM on healthrelated quality of life demonstrated a significantly impaired health-related quality of life in all subsets of IIM compared with the general population. 95 Disease activity, disease damage and chronic disease course were associated with poorer health-related quality of life.…”

E“VALU”ating board certification in pharmacy

“…In selecting tools as measures of value, healthcare professionals are encouraged to identify evidence‐based instruments with high reliability, validity, and internal consistency 18 . Survey instruments can be used to characterize the quality of life, patient satisfaction, and provider satisfaction 19,20 . When attempting to demonstrate value from the healthcare or payer perspectives cost‐effectiveness and cost avoidance designs may be preferred although a quality improvement, such as improvement in clinical outcomes and improvement in vaccination rates are desirable components of value 16,17 .…”

“…18 Survey instruments can be used to characterize the quality of life, patient satisfaction, and provider satisfaction. 19,20 When attempting to demonstrate value from the healthcare or payer perspectives cost-effectiveness and cost avoidance designs may be preferred although a quality improvement, such as improvement in clinical outcomes and improvement in vaccination rates are desirable components of value. 16,17 The provider perspective of value can be demonstrated through survey instruments and collaborative/interprofessional practice scales, such as the Assessment of Interprofessional Team Collaboration Scale (AITCS) or Team Decision Making Questionnaire (TDMQ).…”