Preliminary evidence of relationship between genetic markers and oncology patient quality of life (QOL)

BACKGROUND Approximately 10% to 12% of New Zealand children and young people have long-term physical conditions (also known as chronic illnesses) and are more likely to develop psychological problems, particularly anxiety and depression. Delayed treatment leads to worse physical and mental healthcare, school absence, and poorer long-term outcomes. Recently, electronic health (eHealth) interventions, especially those based on the principles of Cognitive Behavior Therapy (CBT), have been shown to be as good as face-to-face therapy. Biofeedback techniques have also been shown to enhance relaxation during the treatment of anxiety. However, these modalities have rarely been combined. Young people with long-term physical conditions have expressed a preference for well-designed and technologically-based support to deal with psychological issues, especially anxiety. OBJECTIVE This study aimed to co-design and evaluate the (i) acceptability and (ii) usability of a CBT and biofeedback-based, 5-module eHealth game called ‘Starship Rescue’ and (iii) to provide preliminary evidence regarding its effectiveness in addressing anxiety and quality of life in young people with long-term physical conditions. METHODS Starship Rescue was co-designed with children and young people from a tertiary hospital in Auckland, New Zealand. Following this, 24 young people aged 10 to 17 years were enrolled in an open trial, during which they were asked to use the game for an 8-week period. Acceptability of the game to all participants was assessed using a brief, open-ended questionnaire, and more detailed feedback was obtained from a subset of 10 participants via semi-structured interviews. Usability was evaluated via the System Usability Scale (SUS) and device-recorded frequency and duration of access on completion of the game. Anxiety levels were measured prior to commencement, on completion of the game, and 3 months later using the Generalized Anxiety Disorder 7-item scale (GAD-7) and Spence Child Anxiety Scales (SCAS), and at the start of each module and at the end of the game using an embedded Likert/visual analog scale. Quality of life was measured prior to commencement and on completion of the game using the Pediatric Quality of Life Scale (PEDS-QL). RESULTS Users gave Starship Rescue an overall rating of 5.9 out of 10 (range 3-10 and a mean score of 71 out of 100 (SD 11.7; min 47.5; max 90) on the System Usability Scale (SUS). The mean time period for use of the game was just over 11-weeks (78.8 days, 13.5 hours, 40 minutes). Significant reductions in anxiety were noted between the start and end of the game on the GAD-7 (-4.6 (p=0.000)), SCAS (-9.6 (p=0.005)), and the Likert/visual analogue scales (-2.4 (p=0.001)). Quality of life also improved on the PedsQL scale (+4.3 (p=0.042)). All changes were sustained at 3-month follow-up. CONCLUSIONS This study provides preliminary evidence for Starship Rescue being an acceptable, usable and effective eHealth intervention for addressing anxiety in young people with long-term physical conditions. Further evaluation is planned via a more formal randomized controlled trial. CLINICALTRIAL Australian New Zealand Clinical Trials Network Registry (ANZCTR): ACTRN12616001253493p;https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371443 (Archived by WebCite at http://www.webcitation.org/6sYB716lf)

Download Full-text

Physician Perspective on Incorporation of Oncology Patient Quality-of-Life, Fatigue, and Pain Assessment Into Clinical Practice

Journal of Oncology Practice ◽

10.1200/jop.2013.001276 ◽

2014 ◽

Vol 10 (4) ◽

pp. 248-253 ◽

Cited By ~ 17

Author(s):

Joleen M. Hubbard ◽

Axel F. Grothey ◽

Robert R. McWilliams ◽

Jan C. Buckner ◽

Jeff A. Sloan

Keyword(s):

Quality Of Life ◽

Clinical Practice ◽

Pain Assessment ◽

Oncology Patient ◽

Single Item ◽

Physician Perspective ◽

Work Burden

The authors conclude that single-item measures of pain, fatigue, and QOL can be incorporated into oncology clinical practice with positive implications for patients and physicians without increasing duration of visits or work burden.

Download Full-text

Preliminary Validation of the HS-QoL: A Quality-of-Life Measure for Hidradenitis Suppurativa

Journal of Cutaneous Medicine and Surgery ◽

10.1177/1203475417736281 ◽

2017 ◽

Vol 22 (2) ◽

pp. 142-146 ◽

Cited By ~ 7

Author(s):

Chelsea McLellan ◽

Mia Sisic ◽

Hazel H. Oon ◽

Jerry Tan

Keyword(s):

Quality Of Life ◽

Internal Consistency ◽

Convergent Validity ◽

Hidradenitis Suppurativa ◽

Online Survey ◽

Preliminary Evidence ◽

Life Measure ◽

Preliminary Validation ◽

Excellent Internal Consistency

Background: Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease with adverse physical and psychosocial impacts. The development of an HS quality-of-life measure, HS-QoL, has been recently described. Objective: This study was designed to validate the HS-QoL. Method: Fifty-five patients with HS from 4 dermatology clinics completed the 30-minute online survey. Item reduction, reliability (internal consistency), and correlation analysis (to assess convergent validity) were conducted. Results: The HS-QoL was reduced from 53 items to 44 items, resulting in a 7-subscale questionnaire. All subscales demonstrated excellent internal consistency, except for the support subscale, which had adequate internal consistency. All 7 HS-QoL subscales were related to other measures of QoL, life satisfaction, and mental health, which demonstrates convergent validity. Conclusion: The 44-item HS-QoL demonstrated strong preliminary evidence of reliability (internal consistency) and convergent validity.

Download Full-text

An Applied Intersystem Congruence Model of Play, Recreation, and Leisure

Human Factors The Journal of the Human Factors and Ergonomics Society ◽

10.1177/001872087401600513 ◽

1974 ◽

Vol 16 (5) ◽

pp. 545-557 ◽

Cited By ~ 2

Author(s):

Joseph Levy

Keyword(s):

Quality Of Life ◽

Empirical Evidence ◽

Preliminary Evidence ◽

Logical Nature ◽

Congruence Model ◽

Recreation And Leisure

Scholarly writings on the causes and effects of play, recreation, and leisure from Aristotle' Ethics to the most contemporary articulation on Leisure and the Quality of Life have been of a philosophical, speculative, and logical nature. But there has been little effort devoted to empirically validating or systematically researching what motivates people to become involved in certain forms of leisure and what are the effectsof participation in these activities. The purpose of the present paper is three-fold: (1) to propose an applied intersystem congruence model of play; (2) to discuss some empirical evidence which offers preliminary evidence for the intersystem congruence model of play; and (3) to suggest some problems for further consideration.

Download Full-text

Quality of Life in the Neuro-Oncology Patient: A Symposium

Journal of Neuroscience Nursing ◽

10.1097/01376517-199508000-00005 ◽

1995 ◽

Vol 27 (4) ◽

pp. 219-223 ◽

Cited By ~ 2

Author(s):

Chris Stewart-Amidei

Keyword(s):

Quality Of Life ◽

Oncology Patient

Download Full-text

Feasibility of Children in Disaster: Evaluation and Recovery (CIDER) Protocol for Traumatized Adolescents in South Korea: A Preliminary Study

10.20944/preprints201902.0142.v1 ◽

2019 ◽

Author(s):

Mi-Sun Lee ◽

Hyun Soo Kim ◽

Eun Jin Park ◽

Soo-Young Bhang

Keyword(s):

Quality Of Life ◽

Group Psychotherapy ◽

Traumatic Stress ◽

Traumatic Events ◽

Preliminary Evidence ◽

Rank Test ◽

Traumatic Memory ◽

Post Traumatic Stress ◽

Post Traumatic

We aimed to evaluate the feasibility and preliminary efficacy of trauma-focused group psychotherapy in adolescents who experienced traumatic events in Korea. Participants were assigned and recruited from two sites in Korea. Children in Disaster: Evaluation and Recovery (CIDER) V1.0 is a trauma-focused group psychotherapy approach consisting of psychoeducation, normalization, stabilization, and techniques of managing the traumatic memory. The CIDER intervention consists of eight 50-minute-long sessions. The effectiveness of the intervention was evaluated using the Korean version of the Children’s Response to Traumatic Events Scale-Revised (K-CRTES-R), the Beck Depression Inventory (BDI), the State Anxiety Inventory for Children (SAIC), and the Pediatric Quality of Life Inventory (PedQL). Data were analyzed by Wilcoxon signed-rank test. We recruited 22 traumatized adolescents (mean age 16 years; SD 1.43; range 13–18 years old; 71.4% boys) in this pilot study. The K-CRTES-R scores were significantly improved (Z = −2.85, p < 0.01). The BDI demonstrated the effectiveness of the therapy (Z = −2.35, p < 0.05). The assessment of the PedQL supported the effect of CIDER (Z = −3.08, p < 0.01). However, there was no statistically significant differences in the SAIC scores (Z = −1.90, p > 0.05). The results show that there is preliminary evidence that CIDER intervention reduces post-traumatic stress and depressive symptoms and improves quality of life. Our findings indicate that CIDER is feasible for treating adolescents exposed to traumatic events. Larger controlled trials are needed to establish the efficacy of this trauma-focused group psychotherapy and examine its impact on post-traumatic stress disorder.

Download Full-text

The integration of palliative care into treatment of oncology patients at the Istituto Oncologico Veneto (IOV): The interdisciplinary clinic of simultaneous care.

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.26_suppl.150 ◽

2016 ◽

Vol 34 (26_suppl) ◽

pp. 150-150

Author(s):

Antonella Galiano ◽

Stefania Schiavon ◽

Antonella Brunello ◽

Michela Michielotto ◽

Irene Guglieri ◽

...

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Health Department ◽

Care Physician ◽

Local Health ◽

Oncology Patient ◽

Early Integration ◽

Symptomatic Disease ◽

Assessment And Treatment

150 Background: WHO defines palliative care as an approach that improves the quality of life of patients (pts) and their families facing problems associated with life threatening illnesses. This occurs by means of early identification, assessment and treatment of pain and other problems physical, psychosocial, and spiritual. Recently, palliative care has been incorporated into the treatment of oncology pts earlier in the course of their disease. We aimed to explore this approach at our institution. Methods: We established an interdisciplinary clinic at IOV with the goal of promoting pts’ comprehensive support by integrating palliative care into active oncology treatments. Our primary objectives were to: optimize the quality of life of pts at every stage of their disease, ensure continuity of care through proper coordination of available services and avoid a sense of abandonment at the end of life. Pts included were those with advanced disease who had a life expectancy of less than one year, pts who had symptomatic disease regardless of prognosis, and pts who were considered frail, because of clinical, social, psychological, spiritual, logistical, and economical criteria. The multidisciplinary team consisted of a medical oncologist, a palliative care physician, a psychologist, a nurse and a nutritionist. Results: Between March 2014 and March 2016, 337 pts were visited, with different types of cancer. Median age was 69 (range: 34-93), 44% were men, median PS (ECOG) was 1.5, 47% were undergoing anti-cancer treatment. Reasons for referral included: physical complaints (71%), psychosocial issues (30.3%), nutritional problems (38%) and social problems (7%). For the 46% of patients, domiciliary health care was activated directly by the Local Health Department or through the General Practitioner; specific action have been made in relations to the problems encountered. Conclusions: The Interdisciplinary Clinic of Simultaneous Care carried out at IOV represents a successful pilot experience that proposes an organizational model for early integration of palliative care as an integral part of treating the oncology patient.

Download Full-text