scholarly journals Development and Implementation of Survivorship Tools to Enable Medical Follow-Up After Childhood Cancer Treatment in Southern Sweden

2019 ◽  
pp. 1-6
Author(s):  
Magnus Petersson-Ahrholt ◽  
Thomas Wiebe ◽  
Lars Hjorth ◽  
Thomas Relander ◽  
Helena M. Linge
Keyword(s):  
Health Care ◽  
Cancer Treatment ◽  
Childhood Cancer ◽  
Health Care Professionals ◽  
Risk Group ◽  
Southern Sweden ◽  
Quality Registry ◽  
Treatment Summary ◽  
Group Stratification

PURPOSE Survival rates after childhood cancer have increased from 20% to 80% since the 1970s. The increased number of survivors emphasizes the importance of late effects and their monitoring. Late effects may have a strong impact on quality of life in survivors. The purpose of this study was to make key data in a quality registry available for direct clinical use, enabling health care professionals to perform efficient and appropriate long-term medical follow-up after childhood cancer treatment. METHODS The population-based quality registry upon which this study is centered contains data on all individuals diagnosed with childhood cancer (diagnosed at 18 years of age or younger) in southern Sweden since January 1, 1970, and treatment data on 5-year survivors. Web tools, which were developed and implemented in a health care setting, generate a personalized treatment summary for each patient and enable risk group stratification of survivors. RESULTS Generation of a personalized treatment summary and risk group stratification of survivors led to identification of women at risk for developing breast cancer as a consequence of childhood cancer treatment. Three novel cases of previously undiagnosed breast cancer were identified. CONCLUSION The registry, together with the developed tools, enabled health care professionals to perform medical follow-up in this at-risk patient population.

scholarly journals Mixed methods assessment of impact on health awareness in adult childhood cancer survivors after viewing their personalized digital treatment summary and follow-up recommendations

BMC Cancer ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Helena M. Linge ◽  
Cecilia Follin
Keyword(s):  
Health Care ◽  
Mixed Methods ◽  
Health Literacy ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
The Self ◽  
Health Related ◽  
Treatment Summary

Abstract Background The survival rate after childhood cancer has improved to 80%. The majority of childhood cancer survivors (CCS) will experience late complications which require follow up care, including access to their individual cancer treatment summary. The need to understand CCS needs and preferences in terms of ways to receive information e.g. digitally, becomes important. This study aims to through a mixed methods approach a) examine how CCS’ health awareness was impacted by viewing their personalized digital treatment summary and follow-up recommendations, b) explore E health literacy, and c) determine self-reported survivorship experiences and health care usage. Methods Survivors with a recent visit to the Late effects clinic were eligible for the study (n = 70). A representative sample of primary diagnoses were invited (n = 28). 16 CCS were enrolled. Recent medical visits, e health literacy and impressions of the digital treatment summary were assessed by a survey in conjunction with viewing their digital treatment summary on a computer screen. Their experience of reading and understanding their digital treatment summary in the context of their health related survivorship experiences were assessed in focus groups. The transcribed data was analyzed with conventional qualitative content analysis. Results The self-reported medical problems largely reflected that, only 6,3% reported no cancer-related reasons for seeking medical attention. Of the medical specialists, the primary care physician was the most frequently visited specialist (68.8%). High E health literacy was not associated with treatment features but with educational level (p = 0.003, CI: 3.9–14.6) and sex (p = 0.022, CI: − 13.6- -1.3). All survivors graded the digital treatment summary above average in terms of being valuable, agreeable and comprehensive. The focus group interviews identified three themes: 1) The significance of information, 2) The impact of awareness; and 3) Empowerment. Conclusions Reading the treatment summaries furthered the survivors understanding of their health situation and consequently aided empowerment. A digital treatment summary, provided by knowledgeable health care professionals, may increase the self-managed care and adherence to follow-up recommendations. Further insights into e health literacy in larger samples of CCS may determine to what extent health-related information can be communicated via digital resources to this at risk population.

Mixed methods assessment of impact on health awareness in adult childhood cancer survivors after viewing their personalized digital treatment summary and follow-up recommendations.

2020 ◽  
Author(s):  
Helena Linge ◽  
Cecilia Follin
Keyword(s):  
Health Care ◽  
Mixed Methods ◽  
Health Literacy ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
The Self ◽  
Health Related ◽  
Treatment Summary

Abstract Background: The survival rate after childhood cancer has improved to 80%. The majority of childhood cancer survivors (CCS) will experience late complications which require follow up care, including access to their individual cancer treatment summary. The need to understand CCS needs and preferences in terms of ways to receive information e.g. digitally, becomes important. This study aims to through a mixed methods approach a) examine how CCS’ health awareness was impacted by viewing their personalized digital treatment summary and follow-up recommendations, b) explore E health literacy, and c) determine self-reported survivorship experiences and health care usage. Methods Survivors with a recent visit to the Late effects clinic were eligible for the study (n=70). A representative sample of primary diagnoses were invited (n=28). 16 CCS were enrolled. Recent medical visits, e health literacy and impressions of the digital treatment summary were assessed by a survey in conjunction with viewing their digital treatment summary on a computer screen. Their experience of reading and understanding their digital treatment summary in the context of their health related survivorship experiences were assessed in focus groups. The transcribed data was analyzed with conventional qualitative content analysis. Results The self-reported medical problems largely reflected that, only 6,3% reported no cancer-related reasons for seeking medical attention. Of the medical specialists, the primary care physician was the most frequently visited specialist (68.8%). High E health literacy was not associated with treatment features but with educational level (p=0.003, CI: 3.9-14.6) and sex (p=0.022, CI :-13.6- -1.3). All survivors graded the digital treatment summary above average in terms of being valuable, agreeable and comprehensive. The focus group interviews identified three themes: 1) The significance of information, 2) The impact of awareness; and 3) Empowerment. Conclusions Reading the treatment summaries furthered the survivors understanding of their health situation and consequently aided empowerment. A digital treatment summary, provided by knowledgeable health care professionals, may increase the self-managed care and adherence to follow-up recommendations. Further insights into e health literacy in larger samples of CCS may determine to what extent health-related information can be communicated via digital resources to this at risk population.

scholarly journals Impact on health awareness in adult childhood cancer survivors after perceiving their digital treatment summary and follow-up recommendations.

2020 ◽  
Author(s):  
Helena Linge ◽  
Cecilia Follin
Keyword(s):  
Health Care ◽  
Health Literacy ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Focus Group Interviews ◽  
Treatment History ◽  
Group Interviews ◽  
Treatment Summary

Abstract Background: The survival rate after childhood cancer has improved and today more than 80% of patients with a paediatric malignancy will become 5-year survivors. Two thirds of CCS will experience one or several late complications due to cancer treatment, resulting in excess morbidity and mortality. These complications require regular follow-up care to preserve health, improve quality of life and increase empowerment. In addition, the survivors need education about their diagnosis, treatment history and follow-up plans, including access to their individual cancer treatment summary. This study aims to illuminate childhood cancer survivors’ health awareness after perceiving their personalized digital treatment summary and follow-up recommendations. Methods: To assess the medical background, health related survivorship experiences, and e health literacy, 16 survivors from southern Sweden with varied childhood cancer diagnoses responded to a survey before and after perceiving their digital treatment summary. Their overall experiences were assessed using focus group interviews. The transcribed data was analyzed with conventional qualitative content analysis. Results: The results of the survey show that the self-reported medical problems as well as the perceived survivorship experiences largely reflected what is known about childhood cancer survivors in general. Of the considered medical specialists, the primary care physician was the most frequently visited specialist (68.8%). The E health literacy correlated with level of education, but not length of survival and was not linked to CNS radiotherapy. The survivors graded the treatment summary valuable, agreeable and comprehensive. The focus group interviews identified three themes: 1) The significance of information, 2) The impact of awareness; and 3) Empowerment. Conclusions: In conclusion, childhood cancer survivors with a broad representation of primary diagnoses, were impacted by perceiving their digital treatment history and follow up recommendations. High E health literacy was not associated with treatment features but with educational level and sex. Perceiving the treatment summaries furthered the survivors understanding of their health situation and consequently aided empowerment. Digital treatment summaries delivered by knowledgeable health care professionals could aid continuous health surveillance and promote the patient-health care-shared responsibility of medical follow up after childhood cancer.

scholarly journals Determining transition readiness in Swiss childhood cancer survivors – a feasibility study

BMC Cancer ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Maria Otth ◽  
Patrick Wechsler ◽  
Sibylle Denzler ◽  
Henrik Koehler ◽  
Katrin Scheinemann
Keyword(s):  
Health Care ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Self Management ◽  
Transition Readiness ◽  
Long Term Follow Up ◽  
Time Point

Abstract Background The successful transition of childhood cancer survivors (CCSs) from pediatric to adult long-term follow-up care is a critical phase, and determining the right time point can be challenging. We assessed the feasibility of the use of existing transition readiness tools in the context of the Swiss health care system, assessed partly transition readiness in Swiss CCSs, and compared our findings with Canadian CCSs for which these tools were originally developed. Methods We officially translated the Cancer Worry Scale (CWS) and Self-Management Skill Scale (SMSS) into German and integrated them into this cross-sectional study. We included CCSs attending the long-term follow-up (LTFU) clinic in the Division of Oncology-Hematology, Department of Pediatrics, Kantonsspital Aarau. We used descriptive statistics to describe transition readiness. Results We randomly recruited 50 CCSs aged ≥18 years at participation. The CCSs had a median CWS score of 62 (interquartile range 55–71), indicating a moderate level of cancer-related worry. Despite high self-management skills, some answers showed a dependency of CCSs on their parents. Our experience shows that the CWS and SMSS are easy for Swiss CCSs to use, understand, and complete. The interpretation of the results must take differences in health care systems between countries into account. Conclusions The translated CWS and SMSS are appropriate additional measures to assess transition readiness in CCSs. These scales can be used longitudinally to find the individual time point for transition and the completion by CCSs enables the health care team to individualize the transition process and to support the CCSs according to their individual needs.

scholarly journals Massage Therapy in Outpatient Cancer Care: A Metropolitan Area Analysis

2017 ◽  
Vol 22 (4) ◽  
pp. 851-855 ◽  
Author(s):  
Virginia S. Cowen ◽  
Robin Streit Miccio ◽  
Bijal Parikh
Keyword(s):  
Health Care ◽  
Cancer Treatment ◽  
Cancer Patients ◽  
Health Care Providers ◽  
Metropolitan Area ◽  
Health Care Professionals ◽  
Treatment Plan ◽  
Therapeutic Touch ◽  
Care Providers ◽  
Systematic Analysis

Massage offers cancer patients general quality of life benefits as well as alleviation of cancer-related symptoms/cancer-treatment–related symptoms including pain, anxiety, and fatigue. Little is known about whether massage is accessible to cancer patients who receive treatment in the outpatient setting and how massage is incorporated into the overall cancer treatment plan. Outpatient cancer centers (n = 78) in a single metropolitan area were included this mixed-methods project that included a systematic analysis of website information and a telephone survey. Massage was offered at only 40 centers (51.3% of total). A range of massage modalities were represented, with energy-based therapies (Reiki and Therapeutic Touch) most frequently provided. Although massage therapists are licensed health care providers in the states included in this analysis, massage was also provided by nurses, physical therapists, and other health care professionals.

scholarly journals The role of rehabilitation measures in reintegration of children with brain tumours or leukaemia and their families after completion of cancer treatment: a study protocol

BMJ Open ◽  
2017 ◽  
Vol 7 (8) ◽  
pp. e014505 ◽  
Author(s):  
Mona Leandra Peikert ◽  
Laura Inhestern ◽  
Corinna Bergelt
Keyword(s):  
Observational Study ◽  
Cancer Treatment ◽  
Childhood Cancer ◽  
Quantitative Study ◽  
Prospective Observational Study ◽  
Daily Life ◽  
Oncological Rehabilitation ◽  
Rehabilitation Measures

IntroductionFor ill children as well as for their parents and siblings, childhood cancer poses a major challenge. Little is known about the reintegration into daily life of childhood cancer survivors and their families. The aim of this prospective observational study is to further the understanding of the role of rehabilitation measures in the reintegration process of childhood leukaemia or brain tumour survivors and their family members after the end of cancer treatment.Methods and analysisThis prospective observational study consists of three study arms: a quantitative study in cooperation with three German paediatric oncological study registries (study arm 1), a quantitative study in cooperation with a rehabilitation clinic that offers a family-oriented paediatric oncological rehabilitation programme (study arm 2) and a qualitative study at 12-month follow-up including families from the study arms 1 and 2 (study arm 3). In study arm 1, children, parents and siblings are surveyed after treatment (baseline), 4–6 months after baseline measurement and at 12-month follow-up. In study arm 2, data are collected at the beginning and at the end of the rehabilitation measure and at 12-month follow-up. Families are assessed with standardised questionnaires on quality of life, emotional and behavioural symptoms, depression, anxiety, fear of progression, coping and family functioning. Furthermore, self-developed items on rehabilitation aims and reintegration into daily life are used. Where applicable, users and non-users of rehabilitation measures will be compared regarding the outcome parameters. Longitudinal data will be analysed by means of multivariate analysis strategies. Reference values will be used for comparisons if applicable. Qualitative data will be analysed using thematic analysis.Ethics and disseminationThis study has been approved by the medical ethics committee of the Medical Chamber of Hamburg. Data will be published in peer-reviewed journals and presented at conferences.

scholarly journals The Uptake and Use of Telemonitoring in Chronic Care Between 2014 and 2019: Nationwide Survey Among Patients and Health Care Professionals in the Netherlands (Preprint)

2020 ◽  
Author(s):  
Martine W J Huygens ◽  
Helene R Voogdt-Pruis ◽  
Myrah Wouters ◽  
Maaike M Meurs ◽  
Britt van Lettow ◽  
...  
Keyword(s):  
Health Care ◽  
The Netherlands ◽  
Health Care Professionals ◽  
Chronic Care ◽  
Elderly Care ◽  
Care Plan ◽  
Self Management ◽  
Medical Specialists

BACKGROUND Telemonitoring could offer solutions to the mounting challenges for health care and could improve patient self-management. Studies have addressed the benefits and challenges of telemonitoring for certain patient groups. OBJECTIVE This paper will examine the nationwide uptake of telemonitoring in chronic care in the Netherlands from 2014 to 2019 by means of an annual representative survey among patients and health care professionals. METHODS Between 2014 and 2019, approximately 2900 patients with chronic diseases, 700 nurses, and 500 general practitioners (GPs) and medical specialists received a questionnaire. About 30 questions addressed topics about the use of eHealth and experiences with it, including data about telemonitoring. RESULTS Between 2014 and 2019, the use of telemonitoring remained stable for all groups except medical specialists. In medical specialist departments, the use of telemonitoring increased from 11.2% (18/161) in 2014 to 19.6% (36/184) in 2019 (<i>χ</i><sup>2</sup><sub>4</sub>=12.3; <i>P</i>=.02). In 2019, telemonitoring was used by 5.8% (28/485) of people with chronic disease. This was 18.2% (41/225) in GP organizations and 40.4% (44/109), 38.0% (78/205), and 8.9% (29/325) in the organizations of nurses working in primary, secondary, and elderly care, respectively. Up to 10% of the targeted patient group such as diabetics were regarded by health care professionals as suitable for using telemonitoring. The main benefits mentioned by the patients were “comfort” (421/1043, 40.4%) and “living at home for longer/more comfortably” (334/1047, 31.9%). Health care professionals added “improvement of self-management” (63/176, 35.8% to 57/71, 80.3%), “better understanding of the patient’s condition” (47/176, 26.7% to 42/71, 59.2%), “reduction of workload” (53/134, 39.6% of nurses in elderly care), “better tailoring of care plan to the patient’s situation” (95/225, 42.2% of GPs), and “saves time for patients/caregivers” (61/176, 34.7% of medical specialists). Disadvantages mentioned by professionals were that “it takes time to monitor data” (13/130, 10% to 108/225, 48.0%), “it takes time to follow up alerts” (15/130, 11.5% to 117/225, 52.0%), and “it is difficult to estimate which patients can work with telemonitoring” (22/113, 19.5% to 94/225, 41.8%). CONCLUSIONS The uptake of telemonitoring in Dutch chronic care remained stable during 2014-2019 but increased among medical specialists. According to both patients and professionals, telemonitoring improves the quality of life and quality of care. Skills for suitably including eligible patients and for allocating the tasks of data monitoring and follow-up care within the team would help to further increase the use of telemonitoring.

Optimising Hand Surgery during COVID-19 Pandemic

2021 ◽  
Vol 26 (01) ◽  
pp. 84-91
Author(s):  
Shivangi Saha ◽  
Suvashis Dash ◽  
Mohammed Tahir Ansari ◽  
Ashish Dhanraj Bichupuriya ◽  
Amit Kumar Gupta ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Hand Surgery ◽  
Patient Characteristics ◽  
Operative Management ◽  
Hand Injuries ◽  
Care Needs ◽  
Use Of Resources ◽  
Flap Cover

Background: With the emergence of the COVID-19 pandemic, most health-care personnel and resources are redirected to prioritize care for seriously-ill COVID patients. This situation may poorly impact our capacity to care for critically injured patients. We need to devise a strategy to provide rational and essential care to hand trauma victims whilst the access to theatres and anaesthetic support is limited. Our center is a level 1 trauma center, where the pandemic preparedness required reorganization of the trauma services. We aim to summarise the clinical profile and management of these patients and highlight, how we modified our practice to optimize their care. Methods: This is a single-centre retrospective observational study of all patients with hand injuries visiting the Department of Plastic Surgery from 22nd March to 31st May 2020. Patient characteristics, management details, and outcomes were analysed. Results: A total of 102 hand injuries were encountered. Five patients were COVID-19 positive. The mean age was 28.9 ± 14.8 years and eighty-two (80.4%) were males. Thirty-one injuries involved fractures/dislocations, of which 23 (74.2%) were managed non-operatively. Seventy-five (73.5%) patients underwent wound wash or procedure under local anaesthetic and were discharged as soon as they were comfortable. Seventeen cases performed under brachial-plexus block, were discharged within 24 hours except four cases of finger replantation/ revascularisation and one flap cover which were discharged after monitoring for four days. At mean follow-up of 54.4 ± 21.8 days, the rates of early complication and loss to follow-up were 6.9% and 12.7% respectively. Conclusions: Essential trauma care needs to continue keeping in mind, rational use of resources while ensuring safety of the patients and health-care professionals. We need to be flexible and dynamic in our approach, by utilising teleconsultation, non-operative management, and regional anaesthesia wherever feasible.

scholarly journals Outcome of illustrated information leaflet on correct usage of asthma-metered dose inhaler

2019 ◽  
Vol 11 (1) ◽  
Author(s):  
Wendy Wrench ◽  
Lynette Van Dyk ◽  
Sunitha Srinivas ◽  
Ros Dowse
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Dose Inhaler ◽  
Metered Dose Inhaler ◽  
Low Literacy ◽  
Post Intervention ◽  
Care Clinic ◽  
Metered Dose ◽  
Asthma Patients

Background: Research globally has shown that metered dose inhaler (MDI) technique is poor, with patient education and regular demonstration critical in maintaining correct use of inhalers. Patient information containing pictorial aids improves understanding of medicine usage; however, manufacturer leaflets illustrating MDI use may not be easily understood by low-literacy asthma patients.Aim: To develop and evaluate the outcome of a tailored, simplified leaflet on correct MDI technique in asthma patients with limited literacy skills.Setting: A rural primary health care clinic in the Eastern Cape, South Africa.Methods: Pictograms illustrating MDI steps were designed to ensure cultural relevance. The design process of the leaflet was iterative and consultative involving a range of health care professionals as well as patients. Fifty-five rural asthma patients were recruited for the pre-post design educational intervention study. Metered dose inhaler technique was assessed using a checklist, and patients were then educated using the study leaflet. The principal researcher then demonstrated correct MDI technique. This process was repeated at follow-up 4 weeks later.Results: The number of correct steps increased significantly post intervention from 4.6 ± 2.2 at baseline to 7.9 ± 2.7 at follow-up (p 0.05). Statistically significant improvement of correct technique was established for 10 of the 12 steps. Patients liked the pictograms and preferred the study leaflet over the manufacturer leaflet.Conclusion: The tailored, simple, illustrated study leaflet accompanied by a demonstration of MDI technique significantly increased correct MDI technique in low-literacy patients. Patients approved of the illustrated, simple text leaflet, and noted its usefulness in helping them improve their MDI technique.

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