Online support groups for head and neck cancer and health-related quality of life.
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ABSTRACT:
SUBMITTER: Algtewi E
PROVIDER: S-EPMC5548849 | biostudies-other | 2017 Apr
REPOSITORIES: biostudies-other
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Project description:To assess the quality of life in head and neck cancer patients and the various factors which affect the quality of life in head and neck cancer patients was the main aim of the study. A prospective longitudinal study with a sample size of 130 patients was done within the time period of one and a half years. Patients with biopsy proven squamous cell carcinoma of the head and neck were treated as per their treatment protocol either by combined modality or single modality. Follow up at the completion of treatment was done and the quality of life questionnaire was filled out. QoL was assessed pre-treatment and at 4 times at different stages of follow up period. Demographic data was also taken into consideration for comparison which showed that head and neck cancer is more common in the males (80%) between the age group of 35-50 years, chronic tobacco chewers (45%) with most common site of cancer being the oral cavity (61%). Majority of the patients presented at Stage IV of their disease (35%) with largest HRQoL changes seen within the first three months after commencement of treatment. The most debilitating modality of treatment was Surgery + CTRT. Detailed assessment of the various factors which hamper the QoL in head and neck cancer patients should be done by which we can provide quality care and a completely new view into the health care experience and improving patient satisfaction.
| S-EPMC6848337 | biostudies-literature
Project description:PurposeThe purpose of this study was to assess utility coefficients of health states following two minimally invasive surgical approaches for head and neck cancer, namely trans-oral robotic surgery and trans-oral laser microsurgery. Those utility coefficients will be later exploited in an economic evaluation study comparing the two approaches.MethodsThe above cited economic evaluation will be done from the Swiss healthcare system perspective and, as such, Swiss healthcare professionals were interviewed to elicit utility coefficients. Health states, ranging from remission to palliative care, were described using clinical vignettes. A computerized tool (UceWeb) implementing standard gamble and rating scale methods was used.ResultsUtility coefficients for 18 different health states were elicited with the two methods from 47 individuals, for a total of 1692 values. Elicited values varied from 0.980 to 0.213. Comparison with values elicited in previous studies show the need for population-specific elicitation, mainly for the worst health states.ConclusionHerein we report health utility coefficients for the Swiss population for health states following minimally invasive trans-oral surgery. This study provides utility values that can be used not only for a specific cost-utility analysis, but also for future studies involving the same health states.
| S-EPMC8565022 | biostudies-literature
Project description:IntroductionHealth related quality of life information gives patients and carers an indication of how they will be affected following treatment. Such knowledge can promote realistic expectations and help patients come to terms with their outcome. The aim of this paper is to describe the background development of patient information sheets produced at our unit.MethodsThe data were compiled using a common head and neck cancer specific quality of life questionnaire (University of Washington Quality of Life [UW-QOL]). There are 12 domains comprising activity, appearance, anxiety, chewing, mood, pain, recreation, saliva, shoulder, speech, swallowing and taste. The data were collected over 19 years at our unit and focus on follow-up records at around 2 years as this gives a good indication of health related quality of life in survivorship. UW-QOL questionnaires were available from 1,511 patients treated following primary diagnosis of head and neck cancer, and there were 24 subgroups based on cancer site, stage and treatment. There were 2 other subgroups: 132 having transoral laser resection and 176 having laryngectomy.ResultsThe patient and carer research forum helped to design the information sheets, which display overall quality of life, percentages with 'good' outcome and 'significant problem' by domain, and the most important domains. Three examples are included in this paper: early stage oral cancer treated by surgery alone, early laryngeal cancer treated by surgery alone, and late stage oropharyngeal cancer treated by surgery and postoperative radiotherapy. All 26 subgroup information sheets are available in booklet form and on the internet.ConclusionsHow the surgical community best utilises this type of resource needs further research.
| S-EPMC5096582 | biostudies-literature
Project description:The impact of routine assessment of health-related quality of life (HRQoL) on satisfaction with care and the HRQoL of patients with head and neck cancer (HNC) treated with radiotherapy was assessed. Patients with HNC were randomly assigned to two arms, with stratification on sex, cancer localization, and stage of the disease. In the intervention arm, the patients completed the EORTC QLQ-C30 and EORTC QLQ-H&N35 questionnaires first before randomization, then before each medical appointment during radiotherapy (7 weeks), and then every 3 months until 1 year and at 2 years thereafter. In the control arm, the EORTC QLQ-C30 and EORTC QLQ-H&N35 questionnaires were completed before randomization and at 1 year and 2 years thereafter. The primary endpoint was mean change in HRQoL at score at 2 years from baseline assessed by EQ VAS from the EuroQol questionnaire. The secondary endpoint was mean change in satisfaction with care at 2 years from baseline assessed by QLQ-SAT32. Two hundred patients with head and neck cancers were involved in this study (mean age, 58.83 years (range, 36.56-87.89)), of whom 100 were assigned to the intervention arm and 100 to the control arm. Patients in the intervention arm were reported to have a statistically significant increase in EQ VAS at 2 years (p < 0.0001) and exceeded the minimal clinically important difference (mean change at 2 years from baseline = 10.46). In the two arms, mean differences between arms were not statistically significant, but minimal clinically important differences in favor of the intervention arm were found for EQ VAS (mean change difference (MD) = 5.84), satisfaction with care, in particular waiting times (MD = 10.85) and satisfaction with accessibility (MD = 6.52). Routine assessment of HRQoL improves HRQoL and satisfaction with care for patients with HNC treated with radiotherapy.
| S-EPMC8345055 | biostudies-literature
Project description:Patients with cancer deal with problems related to physical, psychological, social, and emotional functions. The aim was to investigate malnutrition defined by the Global Leadership Initiative on Malnutrition (GLIM) criteria in relation to health-related quality of life, anxiety, and depression in patients with head and neck cancer. This was a prospective observational research study with 273 patients followed at the start of treatment, seven weeks, and one year. Data collection included nutritional status and support, and the questionnaires: European Organization for Research and Treatment of Cancer Head and neck cancer module (EORTC QLQ-H&N35) and the Hospital Anxiety and Depression Scale (HADS). Malnutrition was defined using the GLIM criteria. The study showed that patients with malnutrition had significantly greater deterioration in their health-related quality of life at seven weeks. On a group level, health-related quality of life was most severe at this time point and some scores still implied problems at one year. Significantly, more patients reported anxiety at the start of treatment whereas significantly more patients reported depression at seven weeks. Over the trajectory of care, the need for support often varies. Psychosocial support is imperative and at the end of treatment extra focus should be put on nutritional interventions and managing treatment-related symptoms to improve nutritional status and health-related quality of life. In the long-term, head and neck cancer survivors need help to find strategies to cope with the remaining sequel.
| S-EPMC8066581 | biostudies-literature
Project description:BACKGROUND:The incidence of head and neck cancer is increasing slightly. Head and neck cancer but also it's necessary and often successful treatment may affect general domains of health-related quality of life and provoke a variety of adverse symptoms and side effects, both during and after treatment. The objective of this study was to compare a person-centred care intervention in terms of health-related quality of life, disease-specific symptoms or problems, with traditional care as a control group for patients with head and neck cancer. METHODS:In this randomized controlled trial, person-centred-care intervention and traditional care (control) groups comprised 54 and 42 patients, respectively. Outcome measures used were: the EORTC QLQ-C30 and the EORTC QLQ-C35. Both groups answered the questionnaires at baseline and after 4, 10, 18 and 52 weeks from start of treatment. The questionnaires' scores were compared between groups by using independent samples test and non-parametric test for continuous variables. For categorical data, Fisher's exact test was used. Longitudinal data were analysed using generalized linear models for normally distributed repeated measures data. RESULTS:At baseline, the intervention and control groups were comparable in terms of medical and sociodemographic variables, clinical characteristics, health-related quality of life and disease-specific symptoms or problems. At all the follow-up points, even during the worst period for the patients, the person-centred-care group consistently reported better scores than the control group. The differences were numerically but not always statistically significant. When testing longitudinal data, statistically significant results were found for head and neck cancer-specific problems, swallowing (p?=?0.014), social eating (p?=?0.048) and feeling ill (p?=?0.021). CONCLUSIONS:The results from this study suggest that adopting the person-centred-care concept practiced here could be a way to improve function and wellbeing in patients with head and neck cancer. TRIAL REGISTRATION:The study was retrospectively registered in 2016-12-05 in Clinical Trials gov. "Can a Person-centred-care Intervention Improve Health-related Quality of Life in Patients With Head and Neck Cancer" registration number: NCT02982746.
| S-EPMC5320778 | biostudies-literature
Project description:Objective:Physical rehabilitation programs hold the potential to mitigate deterioration in health-related quality of life (HRQoL) in patients with head and neck cancer. The objective was to assess development in relevant domains of HRQoL following a physical exercise and nutrition intervention administrated during or after treatment. Methods:In a pilot study, 41 patients were randomized to resistance training and oral nutritional supplements during (EN-DUR, n = 20) or after (EN-AF, n = 21) radiotherapy. Global health status/QoL (GHS) and physical functioning (PF) were measured by the European Organization for Research and Treatment of Cancer (EORTC) quality of life questionnaire at baseline, week 6, and week 14. Differences between the groups were assessed by analysis of covariance. A difference of ?10 points in GHS and PF was interpreted as clinically relevant. Results:No statistically significant differences were detected between the groups; however, clinically relevant changes and differences in GHS and PF were observed. From baseline to week 6, GHS decreased 9 points in the EN-DUR group and 23 points in the EN-AF group and PF decreased 13 points and 21 points, respectively. From week 6 to week 14, GHS increased 14 points in the EN-DUR group and 26 points EN-AF group and PF did not change (0 points) in the EN-DUR group and increased 16 points in the EN-AF group. Conclusion:The findings from the present pilot study are promising and indicate that a physical rehabilitation program may have a positive impact on HRQoL during treatment and enhance recovery after treatment. A definitive randomized trial is warranted. Level of Evidence:1b-Individual randomized controlled trial.
| S-EPMC7178444 | biostudies-literature
Project description:ObjectiveInformational social support is one of the main reasons for patients to visit online health communities (OHCs). Calls have been made to investigate the objective quality of such support in the light of a worrying number of inaccurate online health-related information. The main aim of this study is to conceptualize the Quality of Informational Social Support (QISS) and develop and test a measure of QISS for content analysis. A further aim is to investigate the level of QISS in cancer-related messages in the largest OHC in Slovenia and examine the differences among various types of discussion forums, namely, online consultation forums, online support group forums, and socializing forums.MethodsA multidimensional measurement instrument was developed, which included 20 items in a coding scheme for a content analysis of cancer-related messages. On a set of almost three million posts published between 2015 and 2019, a machine-learning algorithm was used to detect cancer-related discussions in the OHC. We then identified the messages providing informational social support, and through quantitative content analysis, three experts coded a random sample of 403 cancer-related messages for the QISS.ResultsThe results demonstrate a good level of interrater reliability and agreement for a QISS scale with six dimensions, each demonstrating good internal consistency. The results reveal large differences among the social support, socializing, and consultation forums, with the latter recording significantly higher quality in terms of accuracy (M = 4.48, P < .001), trustworthiness (M = 4.65, P < .001), relevance (M = 3.59, P < .001), and justification (M = 3.81, P = .05) in messages providing informational social support regarding cancer-related issues.ConclusionsThis study provides the research field with a valid tool to further investigate the factors and consequences of varying quality of information exchanged in supportive communication. From a practical perspective, OHCs should dedicate more resources and develop mechanisms for the professional moderation of health-related topics in socializing forums and thereby suppress the publication and dissemination of low-quality information among OHC users and visitors.
| S-EPMC9941603 | biostudies-literature
Project description:BACKGROUND: Head and neck cancer (HNC) patients are prone to have a poor health-related quality of life after cancer treatment. This study investigated the effect of the nurse counselling and after intervention (NUCAI) on the health-related quality of life and depressive symptoms of HNC patients between 12 and 24 months after cancer treatment. METHODS: Two hundred and five HNC patients were randomly allocated to NUCAI (N=103) or usual care (N=102). The 12-month nurse-led NUCAI is problem-focused and patient-driven and aims to help HNC patients manage with the physical, psychological and social consequences of their disease and its treatment. Health-related quality of life was evaluated with the EORTC QLQ-C30 and QLQ H&N35. Depressive symptoms were evaluated with the CES-D. RESULTS: At 12 months the intervention group showed a significant (P<0.05) improvement in emotional and physical functioning, pain, swallowing, social contact, mouth opening and depressive symptoms. At 18 months, global quality of life, role and emotional functioning, pain, swallowing, mouth opening and depressive symptoms were significantly better in the intervention group than in the control group, and at 24 months emotional functioning and fatigue were significantly better in the intervention group. CONCLUSION: The NUCAI effectively improved several domains of health-related quality of life and depressive symptoms in HNC patients and would seem a promising intervention for implementation in daily clinical practice.
| S-EPMC3915114 | biostudies-other
Project description:BackgroundBoth the incidence and survival rate of head and neck cancer (HNC) is increasing, making quality of life of HNC survivors an important issue.MethodsIn this cross-sectional study we compared the oral health related quality of life (OHRQoL) of long-term HNC survivors to that of a general population cohort from the seventh survey of the Tromsø study with the Oral Impact on Daily Performances questionnaire. Comparisons were done with frequency analyses and cross tabulation. We also assessed OHRQoL's association to sociodemographic and oral health related variables in both cohorts as well as with cancer related variables in the HNC cohort with regression analyses.ResultsThe HNC survivors had four times the risk of reporting problems with daily performances compared with the general population cohort. The ability to eat and enjoy food was most frequently affected in both cohorts. Moderate-poor self-rated dental health and general health as well as high frequency of dental visits were significantly associated with poorer OHRQoL. To have a history of oral or pharyngeal cancer was associated with more problems than having a history of laryngeal cancer.ConclusionsOur study shows that HNC treatment is associated with a strong and lasting impairment of OHRQoL, highlighting the need to find less toxic, yet effective ways to treat the disease, and to provide easy access to expert dental care at all stages of the disease to minimize morbidity. Given the widespread side effects of cancer treatment, a multidisciplinary approach might be required to improve the OHRQoL of HNC survivors.
| S-EPMC8969380 | biostudies-literature