Feasibility and Acceptability of Digital Legacy-Making: An Innovative Story-Telling Intervention for Adults With Cancer

Author(s):  
Susan DeSanto-Madeya ◽  
Jennifer Tjia ◽  
Christina Fitch ◽  
Amy Wachholtz

Background: This study examined the feasibility, burden and acceptability of a legacy-making intervention in adults with cancer and preliminary effects on patient quality-of-life (QOL) measures. Method: We conducted a Stage IB pilot, intervention study. The intervention was a digital video legacy-making interview of adults with advanced cancer to create a digital video of their memories and experiences. Baseline and post-video QOL assessments included: Functional Assessment of Cancer Therapy—General (FACT-G), Patient Dignity Inventory (PDI), Hospital Anxiety and Depression Scale (HADS), and Emotional Thermometers for distress, anxiety, anger, help and depression. Participants received a final copy of the digital video for distribution to their families. Results: Adults (n = 16) ages 38-83 years old with an advanced or life-limiting cancer diagnosis completed an intervention. Feasibility and acceptability was strong with 0% attrition. While the pilot study was not powered for quantitative significance, there were changes from baseline to post-intervention in the participants’ total or subscale FACT-G scores, PDI, HADS anxiety or depression scores, and Emotional Thermometer scores. Conclusions: A digital video legacy-making intervention is feasible for adults with cancer without significant negative outcomes for individuals completing the study. It remains unclear whether this intervention contributes to positive quality of life outcomes.

2016 ◽  
Vol 22 (10) ◽  
pp. 1289-1299
Author(s):  
Pilar Lusilla-Palacios ◽  
Carmina Castellano-Tejedor

To assess satisfaction with care in acute spinal cord injury patients admitted to a specialized rehabilitation unit prior and after a tailored training in communication skills for the staff, the Picker Patient Experience-33 ((1) Content of the information, (2) Quality of the information, and (3) Quality of the relationship), the Spinal Cord Independence Measure-III, and the Hospital Anxiety and Depression Scale were administered. The more troublesome dimension regarding patients’ satisfaction was content of the information, with 88.37 and 91.43 percent (pre/post-intervention) reporting problems with information provided concerning their rights, and 51.15 and 58.72 percent (pre/post-intervention) with the information received at discharge. Overall, functionality (Spinal Cord Independence Measure-III) improved at discharge, but Hospital Anxiety and Depression Scale pre/post-scores revealed to be high.


2021 ◽  
Vol 12 ◽  
Author(s):  
Karen M. Olsson ◽  
Tanja Meltendorf ◽  
Jan Fuge ◽  
Jan C. Kamp ◽  
Da-Hee Park ◽  
...  

Objective: Mental health may affect the quality of life (QoL) in patients with pulmonary arterial hypertension (PAH). However, mental disorders have not been systematically assessed in these patients. We examined the prevalence of mental disorders using structured interviews and determined their impact on QoL in patients with PAH.Methods: This study included 217 patients with PAH from two German referral centers. Psychiatric disorders were assessed using the structured clinical interview for DSM-V. QoL was assessed using the WHO Quality of Life questionnaire (short form). The diagnostic value of the Hospital Anxiety and Depression Scale was evaluated by receiver operating characteristic curve analysis.Results: More than one third of the patients had psychological disorders with current or past adjustment disorder (38.2%), current major depressive disorder (23.0%), and panic disorder (15.2%) being the most prevalent mental illnesses. About half of the patients with a history of adjustment disorder developed at least one other mental illness. The presence of mental disorders had a profound impact on QoL. The Hospital Anxiety and Depression Scale ruled out panic disorder and depression disorder with negative predictive values of almost 90%.Conclusion: Mental disorders, in particular adjustment disorder, major depression, and panic disorder, are common in patients with PAH and contribute to impaired QoL in these patients. The Hospital Anxiety and Depression Scale may be used as a screening tool for the most common mental health disorders. Future studies need to address interventional strategies targeting mental disorders in patients with PAH.


2021 ◽  
pp. 42-46
Author(s):  
V. E. Bandel ◽  
E. I. Mikhailova

Objective. To study the quality of life (QoL) and psycho-emotional state in patients with different degrees of ulcerative colitis (UC) activity.Materials and methods. The study involved 52 patients with UC and 52 healthy volunteers (HVs). The survey was performed using the questionnaire IBDQ, assessing the quality of life in patients with inflammatory bowel diseases, the Hospital Anxiety and Depression Scale (HADS), and the questionnaire by A.M. Vein.Results. The patients with UC in comparison with the HVs have a lower QoL in the overall score (p < 0.05), a greater severity of psychological problems both according to the anxiety scale (p < 0.05) and to the depression scale (p < 0.05).), and they tend to develop the autonomic dysfunction syndrome more often (p < 0.05).Conclusion. The method of the QoL assessment and psycho-emotional state in patients with UC provides accurate scientifc information about the physical, psychological, emotional and social status of the patients.


Author(s):  
Raysa Silva Venâncio ◽  
Tamiris Beppler Martins ◽  
Keyla Mara Dos Santos ◽  
Gilmar Moraes Santos

Introduction: Osteosarcoma is the most common malignancy among musculoskeletal tumors. It can be treated for preservation member or amputation. The cases treated for preservation member have improved functionality and quality of life, however, patients with oncologic diseases exhibit symptoms of anxiety and depression. The aim of this study is to describe the role of physiotherapy in the hip endoprosthesis after surgery for osteosarcoma of a patient treated at the Clinic Physiotherapy School of the University of the State of Santa Catarina (CEFID / UDESC) and verify their quality of life, functionality and symptoms of anxiety and depression. Materials and Methods: A descriptive study through case report. The subject was assessed before and after 10 sessions of physiotherapy on the quality of life, functionality and symptoms of anxiety and depression using a standardized assessment form, the Quality of Life Assessment Questionnaire (WHOQOL-BREF), the system Functional assessment (Musculoskeletal Tumor Society Rating Scale - MSTS); of Lower Limb Function Scale (EFMI) and the Hospital Anxiety and Depression Scale (Hospital Anxiety and Depression Scale - HADS); Results and Conclusions: Physical therapy treatment proposed to the patient allowed the increase of muscle strength; increased muscle tropism; improved member functionality (65% of EFMI); possible reduction of anxiety or depressive symptoms in HADS; presenting score (67.31%) of the WHOQOL-BREF and (56%) in MSTS. Thus, based on the functional, emotional and psychological outcomes, the proposed physical therapy had a positive influence on a patient's quality of life osteosarcoma at the proximal end of the left femur, underwent resection and reconstruction member with endoprosthesis.


MedAlliance ◽  
2020 ◽  
Vol 8 (3) ◽  
pp. 25-30

The results of sanatorium treatment of 102 patients (aged 18 to 79 years, 30 men and 72 women) who have had a new coronavirus infection (COVID-19) are presented in the article. Materials and methods. A 21-day health im-proving program was developed to restore the functions of external respiration, increase mobility, achieve psych-oemotional stability, and restore patients’ daily activities. Exercise tolerance (6-minute walking test, Borg scale, mMRC scale), hypoxia tolerance (Genchi and Stange func-tional tests), peripheral muscles’ strength (MRC scale), ox-ygen saturation, anxiety and depression intensity (HADS Hospital Anxiety and Depression Scale), quality of life (EQ-5D), and nutritional status were evaluated, as well as in-dicators of external respiratory function of patients upon admission and discharge from the sanatorium. Results.In the result of such therapy clinical and laboratory indi-cators improved (patients rarer complained of weakness (down from 73% to 3.9%), shortness of breath during exercise (from 58 to 14.7%), manifestations of angiodis-tonic syndrome (from 39 to 3%), and ESR level (from 40 to 13.7%). During the 6-minute walk test, there was a sig-nificant increase in the distance traveled compared to the test at admission in all observation groups. 83 out of 90 test subjects (92.2%) co vered a longer distance covered. On average, the distance increased 14% in patients with mild COVID, the average increase was 81 meters, 12% (47 meters) in patients with moderate severity, and 21% (112 meters) in those who had severe infection. Psych-oemotional state evaluated by the Hospital Anxiety and Depression Scale showed a decrease in the average level of anxiety from 4.9 to 3.6, and depression — from 4.3 to 3 points. The average quality of life score (EQ-5D ques-tionnaire) at discharge was 7.3 points compared to 8.9 at admission. Conclusion. The authors demonstrated the effectiveness of the sanatorium-resort care in achieving psychoemotional stability and restoring daily activities in COVID-19 recovalescents


2012 ◽  
Vol 30 (15_suppl) ◽  
pp. e16507-e16507
Author(s):  
David Goldstein ◽  
Ming Sze ◽  
Melanie Bell ◽  
Madeleine King ◽  
Michael Jefford ◽  
...  

e16507 Background: Immigration is increasing world-wide. We explored disparities in quality of life outcomes for immigrant (IM) versus Anglo-Australian (AA) cancer patients having anti-cancer treatment. Methods: In a cross-sectional design, cancer patients were recruited through outpatient Oncology clinics in New South Wales, Victoria, and the Northern Territory in Australia. IM participants, their parents and grand parents were born in a country where Chinese, Greek, or Arabic is spoken and spoke one of those languages. AAs were born in Australia and spoke English. All were diagnosed with cancer < 1 year previously. Questionnaires (completed in preferred language) included the Hospital Anxiety and Depression Scale (anxiety/depression), FACT-G (quality of life) and the Supportive Care Needs Survey (unmet needs). Adjusted regression models comparing AA and IM groups included age, gender, socio-economic status, education, marital status, religion, time since diagnosis, and cancer type (colorectal, breast, lung, other). Results: There were 910 participants (response rate 57%). IM were similar to AA, except that IM were more likely to be married (76 vs 67 %, p = 0.01) and in the low and the highly educated groups (p < 0.0001). In adjusted analyses, IMs had clinically significant higher anxiety, greater unmet information and physical needs and lower quality of life than AAs (see table). The possible ranges are 0-21 for anxiety and depression, and 0-100 otherwise. Conclusions: In this hospital-based study with a high rate of advanced disease, immigrants with cancer experienced poorer quality of life outcomes, even after adjusting for socio-economic, demographic, and disease variables. Interventions are required to improve their experience of cancer care. Results highlight areas of unmet need that might be better addressed by the health system (particularly with regards to provision of information and meeting support and physical needs). [Table: see text]


2020 ◽  
Vol 56 (1) ◽  
pp. 40-50
Author(s):  
Marthoenis Marthoenis ◽  
Maimun Syukri ◽  
Abdullah Abdullah ◽  
Teuku M Reza Tandi ◽  
Nadisyah Putra ◽  
...  

Objective Routine dialysis is stressful. It has the possibility of leading to depression and anxiety and also reducing patients’ quality of life. Despite these significant consequences, these comorbidities have been rarely studied among Indonesian patients. This study aims to examine the rate of depression, anxiety, and the role of acceptance of their illness on patients’ quality of life. Method A total of 213 patients undergoing hemodialysis in three general hospitals in Aceh, Indonesia, were included in the study. The presence of depression, anxiety, and the quality of life of each patient was assessed using the hospital anxiety and depression scale and WHO quality of life-BREF questionnaires. Results The prevalence of depression and anxiety was 46% and 30.5%, respectively. Depression was only associated with the presence of anxiety and the duration of hemodialysis. Anxiety was negatively associated with quality of life but positively associated with depression and the prescription of an anxiolytic. Overall quality of life was associated with age, body mass index, the presence of anxiety, and acceptance of the illness. Acceptance of the illness was also independently associated with almost every domain of patients’ quality of life. Conclusions The rates of depression and anxiety among patients undergoing hemodialysis in the current study setting are relatively similar to the rates in other settings. Patients’ acceptance of their illnesses is significantly associated with the occurrence of anxiety and quality of life. Therefore, health practitioners should help patients accept their illnesses and the administration of regular hemodialysis.


2018 ◽  
Vol 36 (8) ◽  
pp. 780-788 ◽  
Author(s):  
Corinne Urech ◽  
Astrid Grossert ◽  
Judith Alder ◽  
Sandra Scherer ◽  
Barbara Handschin ◽  
...  

Purpose Being diagnosed with cancer causes major psychological distress; however, a majority of patients lack psychological support during this critical period. Internet interventions help patients overcome many barriers to seeking face-to-face support and may thus close this gap. We assessed feasibility and efficacy of Web-based stress management (STREAM [Stress-Aktiv-Mindern]) for newly diagnosed patients with cancer. Patients and Methods In a randomized controlled trial, patients with cancer who had started first-line treatment within the previous 12 weeks were randomly assigned to a therapist-guided Web-based intervention or a wait-list (control), stratified according to distress level (≥ 5 v < 5 on scale of 0 to 10). Primary efficacy end point was quality of life after the intervention (Functional Assessment of Chronic Illness Therapy–Fatigue). Secondary end points included distress (Distress Thermometer) and anxiety or depression (Hospital Anxiety and Depression Scale). Treatment effect was assessed with analyses of covariance, adjusted for baseline distress. Results A total of 222 of 229 screened patients applied online for participation. Between September 2014 and November 2016, 129 newly diagnosed patients with cancer, including 92 women treated for breast cancer, were randomly assigned to the intervention (n = 65) or control (n = 64) group. Adherence was good, with 80.0% of patients using ≥ six of eight modules. Psychologists spent 13.3 minutes per week (interquartile range, 9.5-17.9 minutes per week) per patient for online guidance. After the intervention, quality of life was significantly higher (Functional Assessment of Chronic Illness Therapy–Fatigue: mean, 8.59 points; 95% CI, 2.45 to 14.73 points; P = .007) and distress significantly lower (Distress Thermometer: mean, −0.85; 95% CI, −1.60 to −0.10; P = .03) in the intervention group as compared with the control. Changes in anxiety or depression were not significant in the intention-to-treat population (Hospital Anxiety and Depression Scale: mean, −1.28; 95% CI, −3.02 to 0.45; P = .15). Quality of life increased in the control group with the delayed intervention. Conclusion The Web-based stress management program STREAM is feasible and effective in improving quality of life.


2020 ◽  
Vol 8 ◽  
pp. 205031212094307
Author(s):  
Céline Bodéré ◽  
Mathilde Cabon ◽  
Alain Woda ◽  
Marie-Agnès Giroux-Metges ◽  
Youenn Bodéré ◽  
...  

We studied the effects of a specific cardio training program lasting 5 years on pain and quality of life in fibromyalgia patients. Method: An observational longitudinal pilot study was conducted in 138 fibromyalgia women. Fibromyalgia women recruited were asked to carry out three sessions per week, each lasting 45 min, of moderate-intensity continuous training (64%–75% Maximal Heart rate [HRmax]). During the first year, the patients progressively increased their training intensity. During the last 2 years, the patients were asked to associate moderate-intensity continuous training and high-intensity interval training (85%–90% HRmax). Pain on a visual analog scale, anxiety and depression state on the Hospital Anxiety and Depression Scale, impact of fibromyalgia on daily life using the Fibromyalgia Impact Questionnaire, heart rate and sleep quality (visual analog scale) were assessed at baseline and each year for 5 years. Results: Forty-nine patients dropped out in the first year. Depending on their training status, the remaining 89 patients were retrospectively assigned to one of the three groups: Active (moderate-intensity continuous training), Semi-Active (one or two sessions, low-intensity continuous training <60% HRmax) and Passive (non-completion of training), based on their ability to comply with the program. Alleviation of all symptoms ( p < 0.0001) was observed in the Active group. Increasing exercise intensity enhanced the effects obtained with moderate-intensity continuous training. Significant change in the Fibromyalgia Impact Questionnaire ( p < 0.0001) and depression (Hospital Anxiety and Depression Scale; p < 0.0001), and no significant decrease in pain were noted in the Semi-Active group. No effect of the training was observed in the Passive group. Conclusion: The study intervention associated with multidisciplinary care alleviated pain, anxiety and depression, and improved both quality of life and quality of sleep, in fibromyalgia patients.


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