Despite the advances in the treatment of HIV, people living with HIV (PLHIV) still experience impairment of health-related quality of life (HRQOL). The aim of the study was to explore factors ...associated with HRQOL in a well-treated Norwegian HIV population.
Two hundred and forty-five patients were recruited from two outpatient clinics to participate in this cross-sectional study of addiction, mental distress, post-traumatic stress disorder, fatigue, somatic health, and HRQOL. The latter was measured using the 36-Item Short Form Health Survey (SF-36). Stepwise multiple linear regression analysis was used to examine the adjusted associations between demographic and disease-related variables and HRQOL.
The study population was virologically and immunologically stable. Their mean age was 43.8 (SD = 11.7) years, 131 (54%) were men, and 33% were native Norwegians. Compared with the general population (published in previous studies), patients reported worse SF-36 scores for five of eight domains: mental health, general health, social function, physical role limitation, and emotional role limitation (all p < 0.001). Compared with men, women reported better SF-36 scores within the domains vitality (63.1 (23.6) vs. 55.9 (26.7), p = 0.026) and general health (73.4 (23.2) vs. 64.4 (30.1), p = 0.009). In the multivariate analyses, higher SF-36- physical component score values were independently associated with young age (p = 0.020), being employed, student, or pensioner (p = 0.009), low comorbidity score (p = 0.015), low anxiety and depression score (p = 0.015), being at risk of drug abuse (p = 0.037), and not being fatigued (p < 0.001). Higher SF-36-mental component score values were independently associated with older age (p = 0.018), being from a country outside Europe or from Norway (p = 0.029), shorter time since diagnosis, low anxiety and depression score (p < 0.001), answering 'no' regarding alcohol abuse (p = 0.013), and not being fatigued (p < 0.001).
HRQOL was poorer in PLHIV than in the general population in Norway. It is important to focus on somatic and mental comorbidities when delivering health-care services in the ageing population of PLHIV to improve HRQOL even among a well-treated group of PLHIV as found in Norway.
For people living with HIV (PLHIV) who can access lifesaving treatment, HIV has become a chronic lifelong condition; however, PLHIV have more mental and somatic comorbidities than their HIV-negative ...peers. In this cross-sectional study, we assessed the prevalence of mental distress and identified factors associated with major depression among 244 well-treated PLHIV residing in Norway. Participants completed validated questionnaires covering mental and somatic health. The prevalence of mental distress, defined as a score on the Hopkins Symptom Check List-25 >1.75, was 32%, and that of symptoms of major depression, defined as a score on the Beck Depression Inventory-II ≥20, was 15%. The factors associated with major depressive symptoms identified using logistic regression were risk of drug abuse (adjusted odds ratio (AOR) 15.1, 95% confidence interval (CI) 3.28, 69.3), fatigue (AOR 12.5, 95% CI 3.90, 40.0), trouble sleeping (AOR 7.90, 95% CI 2.85, 21.9), African origin (AOR 3.90, 95% CI 1.28, 11.9), low education (AOR 3.31, 95% CI 1.18, 9.30), and non-disclosure (AOR 3.22, 95% CI 1.04, 10.0). Our findings indicate that the prevalence rates of mental distress and major depressive symptoms are higher among well-treated PLHIV residing in Norway than in the general population. These conditions are under-diagnosed and under-treated, and increased awareness is needed.
Purpose For adolescents and young adults (AYAs), the impact of a cancer diagnosis and subsequent treatment is likely to be distinct from other age groups given the unique and complex psychosocial ...challenges of this developmental phase. In this review of the literature, we report the health-related quality of life (HRQoL) issues experienced by AYAs diagnosed with cancer and undergoing treatment. Methods MEDLINE, EMBASE, CINAHL, PsychINFO and the Cochrane Library Databases were searched for publications reporting HRQoL of AYAs. Issues generated from interviews with AYAs or from responses to patient reported outcome measures (PROMs) were extracted. Results 166 papers were reviewed in full and comprised 72 papers covering 69 primary studies, 49 measurement development or evaluation papers and 45 reviews. Of the 69 studies reviewed, 11 (16%) used interviews to elicit AYAs' descriptions of HRQoL issues. The majority of the PROMs used in the studies represent adaptations of paediatric or adult measures. HRQoL issues were organised into the following categories: physical, cognitive, restricted activities, relationships with others, fertility, emotions, body image and spirituality/outlook on life. Conclusion The HRQoL issues presented within this review are likely to be informative to health care professionals and AYAs. The extensive list of issues suggests that the impact of a cancer diagnosis and treatment during adolescence and young adulthood is widespread and reflects the complexities of this developmental phase.
Objective
Health‐related quality of life (HRQoL) concerns of adolescents and young adults (AYAs) aged 14–25 years were compared with those of older adults (26–60 years) with cancer.
Methods
AYAs and ...older adults receiving curative intent treatment or supportive palliative care for cancer were recruited from eight research centres across Europe. Participants used a rating scale to score the relevance and importance of a list of 77 issues covering 10 areas of HRQoL concern: symptoms; activity restrictions; social; emotional; body image; self‐appraisals; outlook on life; lifestyle; treatment‐related and life beyond treatment.
Results
HRQoL issues were reviewed by 33 AYAs and 25 older adults. Several issues were recognised as relevant and important across all age groups: symptoms, emotional impact, outlook on life, lifestyle and treatment‐related. A number of issues were more relevant or important to AYAs including interrupted education, greater motivation to achieve academic goals, increased maturity, boredom, fertility and change in living situation.
Conclusion
While there is overlap in several of the HRQoL concerns across the age span, it is important that HRQoL measures used with AYAs capture the diverse and unique psychosocial aspects of this developmental stage.
In recent years, the assessment of health-related quality of life (HRQoL) has been recognized as particularly informative to healthcare providers. For adolescents and young adults (AYAs), the impact ...of a cancer diagnosis and subsequent treatment is likely to be distinct from other age groups given the unique and complex physical and psychosocial challenges of this developmental phase. The objective of this study was to capture the HRQoL issues described by AYAs with cancer using thematic analysis.
Semi-structured interviews were carried out with 45 AYAs aged 14-25 years from six countries.
The most prevalent cancers presented were leukemia (n = 12) and lymphoma (n = 8). AYAs' descriptive accounts were analyzed and 12 categories identified: Symptoms (i.e., pain, nausea, vomiting) (84% AYAs); activity limitations (education, leisure time activities) (87%); disrupted life plans (29%); social (loss of friends, family life) (91%); emotional (depression, anxiety) (64%); body image (conscious of changed appearance) (36%); self-appraisals (greater maturity, braver) (47%); outlook on life (altered priorities, increased motivation to achieve) (33%); lifestyle (restricted diet, avoidance of infections) (18%), treatment-related (absence of age-appropriate information, treatment burden) (31%); fertility (24%); and financial concerns (13%).
A wide spectrum of both negative and positive issues were described. Several of these issues, such as disrupted life plans and difficulty establishing romantic relationships, are likely to be more common to AYAs with cancer and might not be captured by existing HRQoL measures. Recognition of these issues and finding ways of addressing them should be seen as an essential component of AYA-tailored cancer care.
Background
Targeted therapies (TTs) have revolutionised cancer treatment with their enhanced specificity of action. Compared with conventional therapies, TTs are delivered over a longer period and ...often have unusual symptom profiles. Patient-reported outcome measures such as symptom side-effect lists need to be developed in a time-efficient manner to enable a rapid and full evaluation of new treatments and effective clinical management
Objective
The aim of this study was to develop a set of TT-related symptoms and identify the optimal method for developing symptom lists.
Patients and Methods
Symptoms from TT treatment in the context of Chronic Myeloid Leukaemia (CML), HER2-positive breast cancer, or Gastrointestinal Stromal Tumours (GIST) were identified through literature reviews, interviews with healthcare professionals (HCPs) and patients, and patient focus groups. The symptom set was then pilot tested in patients across the three cancer diagnoses: The number of items derived from each source (literature, patients, or HCPs) were compared.
Results
A total of 316 patients and 86 HCPs from 16 countries participated. An initial set of 209 symptoms was reduced to 61 covering 12 symptom categories. Patient interviews made the greatest contribution to the item set.
Conclusions
Symptom lists should be created based on input from patients. The item set described will be applicable to the assessment of new TTs, and in monitoring treatment.
Purpose
Quality of life (QOL) is an important concept in the field of health and medicine. QOL is a complex concept that is interpreted and defined differently within and between disciplines, ...including the fields of health and medicine. The aims of this study were to systematically review the literature on QOL in medicine and health research and to describe the country of origin, target groups, instruments, design, and conceptual issues.
Methods
A systematic review was conducted to identify research studies on QOL and health-related quality of life (HRQOL). The databases Scopus, which includes Embase and MEDLINE, CINAHL, and PsycINFO were searched for articles published during one random week in November 2016. The ten predefined criteria of Gill and Feinstein were used to evaluate the conceptual and methodological rigor.
Results
QOL research is international and involves a variety of target groups, research designs, and QOL measures. According to the criteria of Gill and Feinstein, the results show that only 13% provided a definition of QOL, 6% distinguished QOL from HRQOL. The most frequently fulfilled criteria were: (i) stating the domains of QOL to be measured; (ii) giving a reason for choosing the instruments used; and (iii) aggregating the results from multiple items.
Conclusion
QOL is an important endpoint in medical and health research, and QOL research involves a variety of patient groups and different research designs. Based on the current evaluation of the methodological and conceptual clarity of QOL research, we conclude that the majority QOL studies in health and medicine have conceptual and methodological challenges.
In this study, we evaluate the ability of digitized digital X-ray radiogrammetry (DXR) bone mineral density (BMD) to identify women with reduced BMD at femoral neck, assessed by dual-energy X-ray ...absorptiometry (DXA). The study population contained women with recent low-energy distal radius fracture and women recruited from the general population, all aged 50 yr or older. The correlation between hand BMD and femoral neck BMD was r=0.65 (p<0.001). We used a triage approach where 2 cutoffs for DXR T-score were defined at which patients with 90% sensitivity and 90% specificity could be identified to have or not have reduced BMD at femoral neck, defined as T-score ≤-2.5 standard deviation (SD). The upper and lower DXR T-score cutoffs were -1.2 and -2.7, respectively. Applying the triage approach in the whole cohort, 32% would require a central DXA assessment to determine the presence or absence of femoral neck T-score ≤-2.5 SD. Our data suggest that DXR can be used to reduce the numbers of patients in need of DXA femoral neck and may, thus, be of clinical value where access to DXA is limited.
Purpose
Several guidelines for the use of patient-reported outcomes (PROs) in clinical studies have been published in the past decade. This review primarily aimed to compare the number and compliance ...with selected PRO-specific criteria for reporting of clinical studies in Europe using PROs published in 2008 and 2018. Secondarily, to describe the study designs, PRO instruments used, patient groups studied, and countries where the clinical studies were conducted.
Methods
A literature search was conducted in MEDLINE to identify eligible publications. To assess the number of publications, all abstracts were screened for eligibility by pairs of reviewers. Compliance with PRO-specific criteria and other key characteristics was assessed in a random sample of 150 eligible full-text publications from each year. Randomized controlled trials (RCTs) were assessed according to the full CONSORT-PRO checklist.
Results
The search identified 1692 publications in 2008 and 4290 in 2018. After screening of abstracts, 1240 from 2008 and 2869 from 2018 were clinical studies using PROs. By full-text review, the proportion of studies discussing PRO-specific limitations and implications was higher in 2018 than in 2008, but there were no differences in the other selected PRO-specific criteria. In 2018, a higher proportion of studies were longitudinal/cohort studies, included ≥ 300 patients, and used electronic administration of PRO than in 2008. The most common patient groups studied were those with cancer or diseases of the musculoskeletal system or connective tissue.
Conclusion
The number of clinical studies from Europe using PROs was higher in 2018 than in 2008, but there was little difference in compliance with the PRO-specific criteria. The studies varied in terms of study design and PRO instruments used in both publication years.
For many adults, their role as a parent is a vital part of their lives. This role is likely to be associated with a parent's health-related quality of life (HRQOL). The aim of this study was to ...explore the associations between gender, demographic and psychosocial variables, pain, and HRQOL in parents of 14-15-year-old adolescents.
This was a cross-sectional study that included 561 parents. Data on demographic, psychosocial variables and pain were collected using validated instruments. HRQOL was assessed using the RAND-36. Data were analysed using univariate and hierarchical multiple linear regression analyses.
Four hundred and thirty-six (78%) mothers and 125 (22%) fathers with a mean age of 45 (SD = 5) years were included. Eighty-one per cent were married/cohabiting, 74% worked full time, and 50% had university education of more than 4 years. Almost one-third reported daily or weekly pain, and more than half (58%) reported using pain analgesics during the previous 4 weeks. Mothers reported significantly lower scores on self-efficacy, self-esteem and for all RAND-36 domains, including the physical component summary (PCS) and mental component summary (MCS) and experienced greater stress than fathers. Hierarchical regression analyses showed that working part-time (beta = 0.40) or full time (beta = 0.52) (reference: not working) had the strongest positive effect on PCS. Absence from work for > 10 days (beta = -0.24) (reference: no absence), short-term pain (beta = -0.14), chronic pain (beta = -0.37) (reference: no pain), and stress (beta = -0.10) had the strongest negative effects on PCS. High self-esteem (beta = 0.11) had the strongest positive effect, whereas stress (beta = -0.58) and absence from work for > 10 days (beta = -0.11) (reference: no absence) had the strongest negative effects on MCS.
Mothers reported significantly lower scores on self-efficacy, self-esteem, and HRQOL, and experienced greater stress than the fathers. A high proportion of parents reported pain. Pain, stress, and low work affiliation were strongly associated with decreased HRQOL in parents. We recommend that parents of adolescents should be provided guidance about coping with pain and stress, and facilitation of a strong work affiliation because these seem to be important to parents' HRQOL.
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