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BACKGROUND AND OBJECTIVE: In oncology, patient-reported outcome measures (PROMs) capturing health-related quality of life (HRQOL) play an increasing role in clinical trials, drug approval, and policy making. This scoping review aimed to identify and elaborate on HRQOL-focussed PROMs used in renal cell cancer (RCC) clinical trials. METHODS: MEDLINE, Web of Science, PsychINFO, Academic Search Elite, CINAHL, Embase, and the Cochrane Library were searched systematically for original peer-reviewed articles on clinical trials including RCC patients and using PROMs, published between 1950 and 2023. Prespecified trial characteristics and information on the PROMs used were extracted. Frequencies and proportions of categorical data, and ranges and medians of continuous variables were calculated. KEY FINDINGS AND LIMITATIONS: Of the 48 unique studies included, the majority followed a randomised controlled design (34, 71%) and evaluated systemic treatments (38, 79%). The trials used 27 different PROMs (max = 6, median = 2), of which only 4 (15%) were developed specifically for kidney cancer patients. Of the trials, 46% did not use any RCC-specific PROM. European Quality of Life-5 Dimensions (EQ-5D), European Organisation for Research and Treatment of Cancer Quality of Life Core Questionnaire (EORTC QLQ-C30), Functional Assessment of Cancer Therapy Kidney Symptom Index (FKSI) -15/19-item version, FKSI-Disease Related Symptoms, and Functional Assessment of Cancer Therapy-General (FACT-G) were the most frequently used questionnaires, with pain, ability to work, fatigue, worry, and sleep quality being the most commonly assessed issues. CONCLUSIONS AND CLINICAL IMPLICATIONS: A variety of PROMs are used in RCC patients, hindering interpretability across trials. The PROMs used differ in terms of both the domains assessed and how the issues are translated into questionnaire items. Though RCC-specific PROMs exist, these have flaws in terms of relevance to patients. To answer predefined relevant HRQOL research questions, revised RCC-specific PROMs and standardisation of their integration into clinical trials are warranted. PATIENT SUMMARY: Researchers are more and more interested in the health-related quality of life of kidney cancer patients and use questionnaires to measure it. This review shows that there are many different health-related quality of life questionnaires that are used in different combinations in clinical trials for kidney cancer patients. This makes it very difficult to compare these study results and draw reliable conclusions for the actual clinical treatment. It was even found that some of the questionnaires used do not capture things that patients actually consider important (eg, emotional issues such as dealing with thoughts about cancer and depression). Therefore, more work needs to be done to develop questionnaires that ask what is really important to kidney cancer patients' health-related quality of life. If these questionnaires are used in a consistent way in clinical trials, the results can be better compared. This will help treat kidney cancer patients in the best possible way.
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AIM: To describe what is known from scientific literature on the use of laryngoscopy to enhance singing pedagogy and foster improvements in vocal development. DESIGN: The scoping review methodological framework by Arksey and O'Malley was used. REVIEW METHODS: A systematic search was conducted and peer-reviewed scientific papers were screened through the Rayyan software. Data were extracted and synthesized thematically as narrative text. DATA SOURCES: Searches were carried out on January 2023 in the Web of Science, MEDLINE, PsychINFO, ERIC, Scopus, Google Scholar, Embase and Academic Search Elite databases using relevant keywords to capture evidence, limited to peer-reviewed scientific papers in Nordic or English language. RESULTS: A total of 1413 studies were screened and assessed for eligibility. Two studies met the inclusion criteria reporting results on the use of laryngoscope in development of singers' voices. Different designs were applied and the charted data characteristics varied. Two populations were explored; one cohort of trained professional female musical theater singers and one cohort of students (both sexes) recruited from a music school. Results from examinations with laryngoscopy regarding vowel quality, register quality, anterior-posterior compression scores, and maximum phonation time are presented. None of the retrieved studies aimed to apply laryngoscopy to enhance singing pedagogy. CONCLUSION: Use of laryngoscopy to enable the singer to directly see their song instrument in order to foster improvements in vocal development, have been subject to little exploration. Only two studies were retrieved in our systematic search, none aimed to study potential pedagogical aspects of applying laryngoscopy. These findings support further investigation of the users', especially singers' and voice teachers' perspective, to guide and inform best practice for use of laryngoscopy as a pedagogical tool in a song development context.
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AIMS: To describe what is known from existing scientific literature on children's and parents' experiences of hospital-based home care and to identify future research areas. DESIGN: The scoping review design used adheres to the methodological framework of Arksey and O'Malley, and to the PRISMA-ScR checklist. REVIEW METHODS: A systematic search was conducted, and peer-reviewed scientific papers were screened through the application of Rayyan software. Data were extracted and presented in table and synthesised thematically as narrative text. DATA SOURCES: Searches were carried out November 2021 and updated November 2022 in the CINAHL, MEDLINE, Embase, Cochrane, Scopus, Web of Science, Academic Search Elite, and Amed databases and Google Scholar. RESULTS: A total of 1950 studies were screened and assessed for eligibility. Eight studies met the inclusion criteria by reporting on parents' experiences, whereas five out of these eight studies also reported on the experiences of children. Parents of children with cancer and preterm children reported feeling more in control, being empowered, and being more connected to their children's care team when their children were receiving hospital-based home care. The family's own resources were activated, and they felt more involved in their children's care compared to being in an inpatient setting. Children with cancer, acute infection, chronic disease, and/or a syndrome reported feeling safer and more comfortable in their home environment and experienced better interaction with their care providers. Some aspects of the children's health-related quality of life (HRQOL) were improved. CONCLUSION: The identified studies indicate that hospital-based home care is a valued alternative to traditional inpatient care by both parents and children. The mode of care has no crucial negative effects. Future studies should encompass the experiences of children with different diagnoses and syndromes and compare patients treated in a traditional hospital setting with those in a hospital-based home-care programme. RELEVANCE TO CLINICAL PRACTICE: Children's and parents' experiences of HBHC indicate that it offers a good solution if parents are well prepared and feel in control. In addition, certain structural conditions must be in place before this type of care can be established: there must be a certain number of patients and the hospital must not be too far away. In the field of neonatal home care, professionals should be more responsive to fathers' needs and tailor support by focusing on their individual experiences and needs. Our findings may guide and inform best practice for present and future providers of HBHC. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Hospital-based home care can offer families a greater degree of autonomy, more flexible care options, improved family functioning, improved communication with care providers, and more control over the child's care. When certain structural conditions are met, such as a certain number of patients, the hospital not being too far away, and parents being well prepared and feeling in control, then hospital-based home care is valued as an alternative to traditional inpatient care. Specific aspects of children's HRQOL may improve, and the psychosocial burden on the family does not increase. IMPACT: HBHC provides a valued alternative to traditional inpatient care and allows families to receive care in the comfort of their own home. Our findings may guide and inform best practice for present and future providers of hospital-based home care. REPORTING METHOD: In this scoping review, we have adhered to the Preferred Reporting Items for Systematic reviews and Meta Analyses Extension for Scoping Reviews checklist. PATIENT OR PUBLIC CONTRIBUTION: There has been no direct patient or public contribution to the review. TRIAL AND PROTOCOL REGISTRATION: Not required.