Children's and parents' experiences of home care provided by hospital staff: A scoping review.

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.

Quality of life in home-dwelling cancer patients aged 80 years and older: a systematic review.

OBJECTIVE: Quality of Life (QoL) in elderly cancer patients is a topic that has been little explored. This systematic review aims to identify, assess, and report the literature on QoL in home-dwelling cancer patients aged 80 years and older and what QoL instruments have been used. METHODS: We systematically searched the databases of Medline, Embase, Cochrane Central Register of Controlled Trials (CENTRAL), PsykINFO, Scopus, Epistemonikos and Cinahl to identify studies of any design measuring QoL among home-dwelling cancer patients aged 80 years and older. We screened the titles and abstracts according to a predefined set of inclusion criteria. Data were systematically extracted into a predesigned data charting form, and descriptively analyzed. The included studies were assessed according to the Critical Appraisal Skills Programme (CASP) checklists, and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement (PRISMA) checklist was used to ensure rigor in conducting our investigations and reporting our findings. This systematic review was registered in PROSPERO (CRD42021240170). RESULTS: We included three studies that specifically analyze QoL outcomes in the subgroup of home-dwelling cancer patients aged 80 years and older, with a total of 833 participants having various cancer diagnoses. 193 of the participants included in these three studies were aged 80 years or more. Different generic and cancer-specific QoL instruments as well as different aims and outcomes were studied. All three studies used a diagnosis-specific instrument, but none of them used an age-specific instrument. Despite heterogeneity in cancer diagnoses, instruments used, and outcomes studied, QoL in home-dwelling cancer patients aged over 80 years old seems to be correlated with age, physical function, comorbidity, living alone, needing at-home care services, being in a poor financial situation and having a small social network. CONCLUSION: Our systematic review revealed only three studies exploring QoL and its determinants in the specific subgroup of home-dwelling cancer patients aged 80 years and over. A gap in the knowledge base has been identified. Future studies of this increasingly important and challenging patient group must be emphasized. Subgroup analyses by age must be performed, and valid age and diagnosis specific QoL instruments must be used to generate evidence in this segment of the population.

Quality of life among cancer inpatients 80 years and older: a systematic review.

OBJECTIVE: The aim of this systematic review was to summarize and assess the literature on quality of life (QoL) among cancer patients 80 years and older admitted to hospitals and what QoL instruments have been used. METHODS: We searched systematically in Medline, Embase and Cinahl. Eligibility criteria included studies with any design measuring QoL among cancer patients 80 years and older hospitalized for treatment (surgery, chemotherapy or radiation therapy). EXCLUSION CRITERIA: studies not available in English, French, German or Spanish. We screened the titles and abstracts according to a predefined set of inclusion criteria. All the included studies were assessed according to the Critical Appraisal Skills Programme checklists, and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement checklist was used to ensure rigor in conducting and reporting. This systematic review was registered in PROSPERO (CRD42017058290). RESULTS: We included 17 studies with 2005 participants with various cancer diagnoses and Classification of Malignant Tumors stages (TNM). The included studies used a range of different QoL instruments and had different aims and outcomes. Both cancer-specific and generic instruments were used. Only one of the 17 studies used an age-specific instrument. All the studies included patients 80 years and older in their cohort, but none specifically analyzed QoL outcomes in this particular subgroup. Based on findings in the age-heterogeneous population (age range 20-100 years), QoL seems to be correlated with the type of diagnosed carcinoma, length of stay, depression and severe symptom burden. CONCLUSION: We were unable to find any research directly exploring QoL and its determinants among cancer patients 80 years and older since none of the included studies presented specific analysis of data in this particular age subgroup. This finding represents a major gap in the knowledge base in this patient group. Based on this finding, we strongly recommend future studies that include this increasingly important and challenging patient group to use valid age- and diagnosis-specific QoL instruments.

Personality and educational level determine self-reported health-related quality-of-life and distress in patients with renal tumors awaiting radical surgery.

Objective: Data on preoperative distress and health-related quality-of-life (HRQoL) is lacking for patients with newly diagnosed renal tumors. This study aims to compare HRQoL within this group with the general population and to study the relationship between distress, HRQoL, personality, coping, and patient/tumor-related factors.Materials and methods: Between January 2011 and June 2014, 153 patients (100 males/53 females), scheduled for surgery were prospectively included. Distress was determined by the General Health Questionnaire (GHQ), HRQoL by EORTC-QLQ-C30 questionnaire, personality by Eysenck Personality Inventory and coping by COPE questionnaire. HRQoL-data from an age and gender matched Norwegian reference population was used for comparison.Results: The study patients had significantly poorer HRQoL than the reference population. GHQ and HRQoL sum scores had a common variance (CV = r2) of 29-35%. In regression models, the measured variables accounted for 33% of the variance for the GHQ score. Significant predictors of the measured variance were neuroticism (18%), education level (3%) and avoidant coping (2%). Similarly, the measured variables accounted for 33-44% of the variance for the HRQoL sum scores. For all HRQoL sum scores, neuroticism predicted 17-28%, while education predicted 4-11% of the measured variance. Large tumor size, comorbidity, performance status and CRP predicted 2-7% of individual sum scores.Conclusions: For both preoperative distress and HRQoL, personality traits such as neuroticism and education level were the most important predictors. Tumor-related factors and other preexisting conditions seemed to be of lesser importance. Thus, preoperatively screening of psychological factors could be helpful to identify those at risk of poor outcomes.

Development of a disease-specific health-related quality of life (HRQoL) questionnaire intended to be used in conjunction with the general European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire (QLQ) in renal cell carcinoma patients.

BACKGROUND: Studying health-related quality of life (HRQoL) following cancer treatment has become part of a growing number of standardized treatment protocols. The European Organization for Research and Treatment of Cancer (EORTC) has developed HRQoL questionnaires aimed at cancer patients. A disease-specific part is not available for renal cell carcinoma (RCC) patients, and the present aim was to develop an EORTC-compatible RCC-specific HRQoL questionnaire. MATERIAL AND METHODS: In total 413 RCC patients were treated with radical or partial nephrectomies in Western Norway during the period from 1997 to 2010. Three hundred and nine patients with histologically proven cancer were still alive at the inclusion time point and 185 RCC patients (71% response rate) returned the questionnaires. We determined HRQoL by the EORTC-QLQ C30 questionnaire. We also asked 13 candidates questions aimed at constituting a disease-specific part. Furthermore, we tested parts of personality by the Eysenck Personality Inventory and coping by the COPE questionnaire. Given tumor treatment, TNM stage, alcohol consumption level and smoking levels were also determined from the hospital records. RESULTS: A factor analysis showed that five factors were formed: one general symptomatic, one general functional, one with disease-specific questions (flank pain, blood in the urine, flank edema, urinary tract infection), one about sexuality and one about weight loss or gain. Ten RCC-specific HRQoL questions were derived from a factor analysis, including four questions related particularly to pain, mobility and social functioning, also representing a short version of the EORTC C30. The psychometric properties and the relation to other psychological and clinical variables were further determined to be satisfactory. CONCLUSIONS: The suggested disease-specific EORTC-QLQ-style RCC10 version adds important information about the HRQoL of RCC patients, providing additional apparent value to the general questionnaire and personality variables, as well as being psychometrically satisfactory. The questionnaire has a potential as a "stand alone" HRQoL questionnaire among RCC patients.

Health-related quality of life, personality and choice of coping are related in renal cell carcinoma patients.

OBJECTIVE: To investigate whether health-related quality of life (HRQoL) depends on psychosocial factors, rather than on factors related to the cancer treatment, this study explored the associations between HRQoL, personality, choice of coping and clinical parameters in surgically treated renal cell carcinoma (RCC) patients. MATERIALS AND METHODS: After exclusions (e.g. death, dementia), 260 patients were found to be eligible and invited to participate. The response rate was 71%. HRQoL was determined by the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30), personality by the Eysenck Personality Inventory and coping by the COPE Questionnaire. Given tumour treatment, TNM stage and patient-reported comorbidity were also determined. The HRQoL indices were also summarized in general quality of life/health, functional sum and symptom sum scores. RESULTS: EORTC C30 sum scores were negatively associated with the personality trait of neuroticism [common variance (CV) 19-36%]. Avoidant choice of coping inversely accounted for 9-18% of the total HRQoL variance, while reported coping by humour was to some extent negatively associated with HRQoL score (CVmax 4%). Indeed, all of the quality of life indices except for one were significantly negatively correlated with neuroticism and avoidance coping. Patients with low HRQoL due to treatment, secondary to flank or open surgery, reported a closer association between problem-focused choice of coping and HRQoL than the other patients. Moreover, present comorbidities were uniquely associated with a lowered HRQoL. CONCLUSIONS: HRQoL is related to treatment-related factors in RCC patients, but shown here to be more strongly associated with psychological factors and present comorbidity. These findings suggest that attention should be paid to supportive treatment of RCC patients.

Health-related quality of life in long-term survivors after renal cancer treatment.

OBJECTIVE: The most important outcome of renal cell carcinoma (RCC) treatment is survival. However, all cancer treatment should evaluate the health-related quality of life (HRQoL) outcome of the treatment. This has not been sufficiently documented in RCC. The aim of this investigation was therefore to document the HRQoL outcome of RCC. MATERIAL AND METHODS: All 413 RCC patients treated with radical or partial nephrectomy at Haukeland University Hospital, Norway, during the period 1997--2010 were included. After exclusions, invitations to participate were mailed to 260 patients; 185 patients (71%) returned the questionnaires. In addition, a cohort of general head and neck squamous cell carcinoma (HNSCC) patients, a cohort of laryngectomized HNSCC patients, and a cohort from the general population of Norway, were used to compare the RCC patients' HRQoL scores. RESULTS: Performance status as measured by the American Society of Anesthesiologists (ASA) score and Eastern Cooperative Oncology Group (ECOG) classification at diagnosis showed an inverse relation to HRQoL [maximum coefficient of variation (CVmax) = 5.3%, p < 0.05]. Flank and open transabdominal approaches to RCC tumour resection were followed by reduced HRQoL compared with a general cohort of Norwegian citizens. However, the laparoscopically treated RCC patients had HRQoL scores at the level of the population. The indices "general health/QoL", the functional indices, and the symptom indices "fatigue", "pain", "sleep", "nausea and vomiting", "constipation" and "diarrhoea" were particularly affected. CONCLUSION: The results show that RCC patients, and in particular those treated by a flank approach but not those treated by minimal invasive surgery, have a multifacetedly reduced HRQoL compared to a general population cohort.

Stability of distress and health-related quality of life as well as relation to neuroticism, coping and TNM stage in head and neck cancer patients during follow-up.

CONCLUSION: Distress and to some extent health-related quality of life (HRQoL) in head and neck squamous cell carcinoma (HNSCC) patients was found to be stable during follow-up. About one-third of the distress and HRQoL variances were accounted for in the present investigation with one-third from T stage, one-third directly from neuroticism and one-third from neuroticism via choice of coping response. In addition, choice of coping response predicted directly 5% of the HRQoL variance. OBJECTIVE: To investigate the stability of distress and HRQoL as related to neuroticism and choice of coping response in HNSCC patients during a follow-up period of 4 years. METHODS: We determined distress by the general health questionnaire (GHQ), HRQoL, personality by the Eysenck Personality Questionnaire (EPQ) and choice of coping response. All patients younger than 78 years with new HNSCC in Western Norway in the period 1992-2001 following successful treatment were interviewed. We determined GHQ and EORTC QLQ C30/H&N35 a second time after 4 years. RESULTS: The GHQ scores were stable, whereas the HRQoL sum scores declined slightly (p < 0.001). The GHQ and the HRQoL scores were predicted by neuroticism, avoidant coping pattern, T stage and smoking history, but primarily H&N-specific HRQoL was predicted by treatment-derived factors.

Personality, choice of coping and T stage predict level of distress in head and neck cancer patients during follow-up.

The aim of the present study was to investigate to what extent TNM stage, treatment level, personality, choice of coping, mood and health-related quality of life (HRQoL) scores predicted distress as measured by general health questionnaire (GHQ) in successfully treated head and neck squamous cell carcinoma (HNSCC) patients. All patients younger than 80 years who had been diagnosed with HNSCC in western Norway in the period from 1992 to 1997, and who had survived until 1999, were sampled. Ninety-six patients (90% response rate) were included 48 ± 2 months after diagnosis. We determined personality by the Eysenck personality inventory, coping by the COPE questionnaire; HRQoL by EORTC QLQ questionnaire; and mood by Beck depression inventory (BDI). Fifty-five of 58 eligible patients were interviewed a second time 47 ± 1 months after the first interview where neuroticism and GHQ-30 questionnaires were answered. Both HRQoL [explained variance (EV), 9-40%] and BDI (EV 26-30%) scores predicted the GHQ scores. Numerical T stage was inversely associated with GHQ scores (EV ~10%). High neuroticism generally predicted high GHQ scores (EV 16-28%). Avoidance focused, problem focused, drinking to cope predicted GHQ scores (EV 8-14%) and high alcohol consumption (EV ~8%) predicted GHQ scores. The present association pattern could still be shown when adjusted for gender, age and educational level when studied by multiple regression analyses. In conclusion, lowered HRQoL, low mood, a high T stage, high alcohol consumption, high neuroticism, coping by avoidance and coping by problem solving directly predicted worse distress as measured by high GHQ scores, whereas neuroticism was also associated with GHQ through choice of coping.

Distress, quality of life, neuroticism and psychological coping are related in head and neck cancer patients during follow-up.

UNLABELLED: The aim of the present study was to study the relation between distress, quality of life (QoL), personality and choice of coping in successfully treated head and neck squamous cell carcinoma (HNSCC) patients, and to study whether distress could be regarded as a QoL variable. MATERIAL AND METHODS: We determined present distress by the general health questionnaire (GHQ), QoL by the European Organization for Research and Treatment of Cancer Quality of life Questionnaire (EORTC-QLQ) C30/H&N35, personality by the Eysenck Personality Inventory and coping by the COPE questionnaire. All patients younger than 80 years who had been diagnosed with HNSCC in Western Norway in the period from 1992 to October 2001, and who had survived at least 12 months without evidence of disease were interviewed. In addition, treatment level, TNM stage, alcohol consumption level as well as smoking level were determined. One hundred and thirty-nine patients (96.5% response rate) were included. RESULTS: Distress and QoL indexes were scored with a common variance (CV) between 20% and 35%. The measured variables account for 40-48% of the variance of the QoL/GHQ scores. Between 3% and 10% of the GHQ/general QoL scores and 10% of the variance of the H&N35 QoL scores were predicted by the TNM stage. The measured psychological factors accounted for 20% of the H&N35 QoL scores and 40% of the measured variance of the general QoL and GHQ responses. High neuroticism (CV≈20-35%), present avoidance coping (CV≈10-30%) and coping by suppression of competing activity (CV≈10-20%) were associated with low QoL and high distress. CONCLUSION: GHQ and QoL scores are scored similar, and are to some extent predicted by treatment related factors, but between 2.5 and 10 times more closely associated with psychological factors. Distress may possibly also be regarded as a QoL variable.