Impact of Cancer on Family Relationships

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 687-687
Author(s):  
Craig Erker ◽  
Ke Yan ◽  
Liyun Zhang ◽  
Kristin Bingen ◽  
Julie A. Panepinto
Keyword(s):  
Cancer Therapy ◽  
Social Relationships ◽  
Family Relationships ◽  
Patient Reported Outcome ◽  
Anxiety And Depression ◽  
T Score ◽  
Patient Reported ◽  
The Family ◽  
The Difference ◽  
The Impact

Abstract Introduction: Family relationships are the subjective experience of feeling involved, important and accepted in one's family. A new patient-reported outcome (PRO) domain has been developed as part of the NIH pediatric PROMIS (patient reported outcome measurement information system) which measures for the first time the child's perspective of family relationships. Previous research has demonstrated the impact of cancer on the family from the parent's perspective. This project sought to determine the impact of cancer and cancer therapy on family relationships in children with cancer and their siblings, both on and off therapy. Our primary hypotheses were that 1) Siblings have worse family relationships compared to their brother or sister with cancer and 2) Children receiving active cancer therapy have worse family relationships compared to childhood cancer survivors. Our secondary hypothesis was that children with poor family relationships would have impairment in depression, anxiety, and social relationship domains. Methods: We conducted a cross sectional study of children with cancer and their siblings aged 8-17 years old. The children belonged to one of four groups: 1) On-therapy patients (children receiving cancer directed therapy), 2) Siblings of on-therapy patients, 3) Off-therapy patients (children who completed cancer therapy at least 6 months ago), 4) Siblings of off-therapy patients. All subjects completed the self-reported PROMIS family relationships domain and PROMIS domains of depression, anxiety, and social relationships. The family relationships domain asks questions such as: "my family and I have fun together" and "my parents listen to me". PROMIS is a validated PRO tool that uses a mean T-score of 50 and standard deviation of 10. Recently, the minimally important difference (MID) for PROMIS was estimated to be 2-3 points on the T-score scale. The Mann-Whitney test was used to test the difference between therapy groups while the Wilcoxon signed-rank test was used to test the difference between patients and siblings. Social relationships, anxiety and depression PROMIS domains were correlated to the family relationships domain using Pearson's correlations. P-values <0.05 were considered as significant. Results: One-hundred and ninety children completed the assessments. Forty-eight were on-therapy patients and 62 were off-therapy patients. Paired data included 25 pairs of on-therapy patients and siblings and 31 pairs of off-therapy patients and siblings. The median and range of age was 12[8-17] years for patients and 13[8-17] for siblings. Fifty-four percent of the children enrolled were male and 65% of patients had leukemia or lymphoma. Off-therapy siblings had lower family relationships T-score than off-therapy patients (p=0.004, median (IQR) of 44.1 (41.1, 48.6) for siblings vs. 47.4 (43.1, 53.2) for patients). Off-therapy patients had higher family relationships T-scores than on-therapy patients (p=0.042, median (IQR) of 48.6 (43.1, 53.2) for off-therapy patients vs. 46.3 (42.1, 48.6) for on-therapy patients). No significant difference was found in family relationships T-scores between on-therapy patients vs. their siblings (p=0.22) or between the two groups of siblings (p=0.58). The correlations between family relationships T-scores and depression or anxiety scores were significantly different from zero for off-therapy patients and their siblings (p<0.001 for patients and p<0.005 for siblings). Impaired family relationships were related to increased depression and anxiety. Also, the correlation between family relationships T-scores and social relationships scores were significantly different from zero for off-therapy patients (p=0.031). Worse family relationships were related to worse social relationships. Conclusion: Off-therapy patients report better family relationships than their siblings and on-therapy patients. Also worse family relationships scores often correlate with increased levels of anxiety and depression. This study provides important information for pediatric oncology staff to help identify at-risk families in need of support. Disclosures No relevant conflicts of interest to declare.

Optimizing electronic capture of patient-reported outcome measures in oncology clinical trials: lessons learned from a qualitative study

2020 ◽  
Vol 9 (17) ◽  
pp. 1195-1204
Author(s):  
Florence D Mowlem ◽  
Brad Sanderson ◽  
Jill V Platko ◽  
Bill Byrom
Keyword(s):  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Lessons Learned ◽  
Structured Interviews ◽  
Patient Reported ◽  
Oncology Clinical Trials ◽  
Anticancer Treatment ◽  
Fit For Purpose ◽  
The Impact ◽  
Electronic Implementation

Aim: To understand the impact of anticancer treatment on oncology patients’ ability to use electronic solutions for completing patient-reported outcomes (ePRO). Materials & methods: Semi-structured interviews were conducted with seven individuals who had experienced a cancer diagnosis and treatment. Results: Participants reported that the following would impact the ability to interact with an ePRO solution: peripheral neuropathy of the hands (4/7), fatigue and/or concentration and memory issues (6/7), where they are in a treatment cycle (5/7). Approaches to improve usability included: larger, well-spaced buttons to deal with finger numbness, the ability to pause a survey and complete at a later point and presenting the recall period with every question to reduce reliance on memory. Conclusion: Symptoms associated with cancers and anticancer treatments can impact the use of technologies. The recommendations for optimizing the electronic implementation of patient-reported outcome instruments in this population provides the potential to improve data quality in oncology trials and places patient needs at the forefront to ensure ‘fit-for-purpose’ solutions.

scholarly journals Development of a patient-reported outcome measure for neck pain in military aircrew: qualitative interviews to inform design and content

BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e039488
Author(s):  
Anna Dowling ◽  
Ellen Slungaard ◽  
Nicola R Heneghan
Keyword(s):  
Neck Pain ◽  
Outcome Measure ◽  
Physical Symptoms ◽  
Patient Reported Outcome ◽  
Direct Access ◽  
Specific Patient ◽  
Concept Elicitation ◽  
Patient Reported Outcome Measure ◽  
Patient Reported ◽  
The Impact

IntroductionThe prevalence of flight-related neck pain is 70% in UK fast jet pilots; much higher than the general population. The Aircrew Conditioning Programme and direct access physiotherapy exist to minimise the impact on military capability, but a population specific patient-reported outcome measure (PROM) is required to investigate the effectiveness of these. We aimed to explore the experiences of flight-related neck pain to inform the content validity and development of a population specific PROM.MethodsQualitative semistructured interviews combining phenomenological and grounded theory methods, reported using Consolidated criteria for Reporting Qualitative research guidelines. A purposive sample of 10 fast jet pilots with neck pain was recruited. Concept elicitation interviews were audio recorded, transcribed verbatim along with field notes. Data analysis involved subject and methodological expertise used a concept elicitation approach.ResultsParticipants included 10 male fast jet pilots, age 34.7 years. Identified themes included: (1) physical symptoms associated with flying activities; (2) occupational effects revealed modifications of flying, or ‘suboptimal’ performance owing to neck pain; (3) psychological effects revealed feelings or worry and (4) social and activity effects showed impact on out of work time.ConclusionPopulation-specific occupational, psychological and social factors should be considered alongside physical symptoms when managing neck pain in military aircrew. Findings support the development of a PROM specifically designed for military aircrew with neck pain.

Correlation between nasal mucosal temperature change and the perception of nasal patency: a literature review

2021 ◽  
Vol 135 (2) ◽  
pp. 104-109
Author(s):  
R Tjahjono ◽  
N Singh
Keyword(s):  
Temperature Change ◽  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Subjective Perception ◽  
Nasal Patency ◽  
Patient Reported Outcome Measure ◽  
Physical Measurements ◽  
Pubmed Database ◽  
Patient Reported ◽  
The Impact

AbstractBackgroundThe mechanism of nasal airflow sensation is poorly understood. This study aimed to examine the role of nasal mucosal temperature change in the subjective perception of nasal patency and the methods by which it can be quantified.MethodMedline and PubMed database searches were performed to retrieve literature relevant to the topic.ResultsThe primary mechanism producing the sensation of nasal patency is thought to be the activation of transient receptor potential melastatin family member 8 (‘TRPM8’), a thermoreceptor that is activated by nasal mucosal cooling. Computational fluid dynamics studies have demonstrated that increased airflow and heat flux are correlated with better patient-reported outcome measure scores. Similarly, physical measurements of the nasal cavity using temperature probes have shown a correlation between lower nasal mucosal temperatures and better patient-reported outcome measure scores.ConclusionNasal mucosal temperature change may be correlated with the perception of improved nasal patency. Future research should quantify the impact of mucosal cooling on the perception of nasal airway obstruction.

Nonunion Rates After Anterior Cervical Discectomy and Fusion: Comparison of Polyetheretherketone vs Structural Allograft Implants

Neurosurgery ◽  
2021 ◽  
Author(s):  
Won Hyung A Ryu ◽  
Dominick Richards ◽  
Mena G Kerolus ◽  
Adewale A Bakare ◽  
Ryan Khanna ◽  
...  
Keyword(s):  
Smoking Status ◽  
Posterior Instrumentation ◽  
Patient Reported Outcome ◽  
Anterior Cervical Discectomy ◽  
Successful Outcome ◽  
Cervical Discectomy ◽  
Structural Allograft ◽  
Modifiable Factors ◽  
Patient Reported ◽  
The Impact

Abstract BACKGROUND Although advances in implant materials, such as polyetheretherketone (PEEK), have been developed aimed to improve outcome after anterior cervical discectomy and fusion (ACDF), it is essential to confirm whether these changes translate into clinically important sustained benefits. OBJECTIVE To compare the radiographic and clinical outcomes of patients undergoing up to 3-level ACDF with PEEK vs structural allograft implants. METHODS In this cohort study, radiographic and symptomatic nonunion rates were compared in consecutive patients who underwent 1 to 3 level ACDF with allograft or PEEK implant. Prospectively collected clinical data and patient-reported outcome (PRO) scores were compared between the allograft and PEEK groups. Regression analysis was performed to determine the predictors of nonunion. RESULTS In total, 194 of 404 patients met the inclusion criteria (79% allograft vs 21% PEEK). Preoperative demographic variables were comparable between the 2 groups except for age. The rate of radiographic nonunion was higher with PEEK implants (39% vs 27%, P = .0035). However, a higher proportion of nonunion in the allograft cohort required posterior instrumentation (14% vs 3%, P = .039). Patients with multilevel procedures and PEEK implants had up to 5.8 times the risk of radiographic nonunion, whereas younger patients, active smokers, and multilevel procedures were at higher risk of symptomatic nonunion. CONCLUSION Along with implant material, factors such as younger age, active smoking status, and the number of operated levels were independent predictors of fusion failure. Given the impact of nonunion on PRO, perioperative optimization of modifiable factors and surgical planning are essential to ensure a successful outcome.

scholarly journals Validation of the German version of the Family Reported Outcome Measure (FROM-16) to assess the impact of disease on the partner or family member

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Susanne A. Elsner ◽  
Sam S. Salek ◽  
Andrew Y. Finlay ◽  
Anna Hagemeier ◽  
Catherine J. Bottomley ◽  
...  
Keyword(s):  
Factor Analysis ◽  
Family Member ◽  
Internal Consistency ◽  
Outcome Measure ◽  
Test Validity ◽  
Family Members ◽  
German Version ◽  
The Family ◽  
The Difference ◽  
The Impact

Abstract Background The Family Reported Outcome Measure (FROM-16) assesses the impact of a patient’s chronic illness on the quality of life (QoL) of the patient’s partner or family members. The aim of the study was to translate, explore the structure of and validate the FROM-16. Methods The questionnaire was translated from English into German (forward, backward, four independent translators). Six interviews with family members were conducted to confirm the questionnaire for linguistic, conceptual, semantic and experiential equivalence and its practicability. The final German translation was tested for internal consistency, reproducibility and test validity. Criterion validity was tested by correlating the scores of the FROM-16 and the Global Health Scale (GHS). Principal component analysis, factor analysis, and confirmatory factor analysis was used to assess the questionnaire’s structure and its domains. Reliability and reproducibility were tested computing the intraclass correlation coefficient (ICC) using one sample t-test for testing the hypothesis that the difference between the scores was not different from zero. Results Overall, 83 family members (61% female, median age: 61 years) completed the questionnaire at two different times (mean interval: 22 days). Internal consistency was good for the FROM-16 scores (Cronbach’s α for total score = 0.86). In those with stable GHS, the ICC for the total score was 0.87 and the difference was not different from zero (p = 0.262) indicating reproducible results. A bi-factor model with a general factor including all items, and two sub-factors comprising the items from the original 2-factor construct had the best fit. Conclusions The German FROM-16 has good reliability, test validity and practicability. It can be considered as an appropriate and generic tool to measure QoL of a patient’s partner or family member. Due to the presence of several cross-loadings we do not recommend the reporting of the scores of the two domains proposed for the original version of FROM-16 when using the German version. Thus, in reporting the results emphasis should be put on the total score. Trial registration: Retrospectively registered: DRKS00021070.

Patient reported outcomes in patients with desmoid type fibromatosis.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 11574-11574
Author(s):  
VIKAS GARG ◽  
Sameer Rastogi ◽  
Adarsh Barwad ◽  
Rambha Panday ◽  
Sandeep Kumar Bhoriwal ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Symptom Burden ◽  
Benign Neoplasm ◽  
Anxiety And Depression ◽  
Appendicular Skeleton ◽  
Healthy Controls ◽  
Symptom Scale ◽  
Cross Sectional ◽  
Patient Reported ◽  
The Impact

11574 Background: Desmoid type fibromatosis (DTF) is a rare benign neoplasm with infiltrative growth and high local recurrences. Due to long disease course, unpredictable growth pattern, and low mortality, using only survival outcomes may be inappropriate. In this study we assessed the impact of DTF on health related quality of life (HRQoL). Methods: This was a cross-sectional study done in patients with DTF. The study participants were asked to fill the EORTC QLQ-C30, GAD-7 and PHQ- 9 q uestionnaires to assess HRQoL, anxiety and depression . Outcomes were also compared with healthy controls. Results: 204 subjects (102 DTF patients and 102 healthy controls) were recruited. Study parameters have been summarized in Table. Appendicular skeleton (limbs + girdle) was most commonly involved in 59 % patients and abdominal wall or mesentery was involved in 22.5 %. Patients have received median of 2 lines of therapy. 54 % patients were currently on sorafenib and 41 % were under active surveillance. Mean global health status in DTF patient 65.58 ± 22.64, was significantly lower than healthy controls. Similarly, DTF patients scored low on all functional scales except cognitive functioning. Symptom scale showed significantly higher symptom burden of fatigue, pain, insomnia and financial difficulties. Anxiety & depression was observed in 39.22 % and 50 % of DTF patients respectively. DTF patients had higher rates of mild, moderate and severe anxiety and depression compared to healthy controls. No difference was observed based on site of disease. Conclusions: DTF patients have significant symptom burden, poor functioning, and heightened anxiety and depression. Patient reported outcomes should be routinely used to assess treatment efficacy in DTF patients.[Table: see text]

scholarly journals How Does the Use of ICTs Affect Family Relationships? A Quantitative Approach

2017 ◽  
Vol 9 (10) ◽  
pp. 92
Author(s):  
Alejandro Valencia-Arias ◽  
Carolina Herazo Avendano ◽  
Laura Echeverri Sanchez ◽  
Juan Manuel Peña Plata ◽  
Stephanía Vasquez Giraldo ◽  
...  
Keyword(s):  
Information And Communication Technologies ◽  
Family Relationships ◽  
Family Relations ◽  
Effective Control ◽  
Critical Position ◽  
Probabilistic Sampling ◽  
The Family ◽  
Information And Communication ◽  
And Gender ◽  
The Impact

Modern societies are increasingly globalized, where information and communication technologies (ICTs) play a fundamental role in every aspect of daily life: from the social, family, labor, among others. Every day more people who without distinguishing age and gender are seen in the need and desire to have at least one technological device. Objective: To examine the impact of using ICTs in the family relations of the residents of Medellín city. Methodology: exploratory-descriptive research through a quantitative methodological design, a non-probabilistic sampling by criterion was made, where 77 people were selected. Data were collected through a questionnaire type survey with closed questions in a virtual way during 3 Months. Results: among the results, 73.4% of responders suggest that there is no adequate supervision of adults to guide children and adolescents to establish a critical position on these contents. On the other hand, the most valued resources are the mobile device and computer for the possibilities of communication between relatives that are far way and for being means to improve the educational and labor processes. Conclusion: studies around ICTs and their impacts have grown significantly, which it ratifies the importance of the topic. It is imperative that parents stop seeing ICTs as a distant entity, and try to be at the forefront of the uses of the same by children, to generate effective control in the training processes within the family.

scholarly journals Motivasi Remaja untuk Mengikuti Program Rehabilitasi Napza

2019 ◽  
Vol 12 (2) ◽  
Author(s):  
Adek Setiyani ◽  
Budi Anna Keliat
Keyword(s):  
Substance Use ◽  
Drug Abuse ◽  
Family Support ◽  
Social Relations ◽  
Family Relationships ◽  
Developmental Task ◽  
Self Identity ◽  
Stage Of Development ◽  
The Family ◽  
The Impact

AbstrakRemaja merupakan tahap perkembangan yang dilalui oleh setiap individu dan mempunyai tugas perkembangan dalam penentuan identitas diri. Dalam proses pembentukan identitas diri, remaja tidak hanya dipengaruhi oleh keluarga, tetapi juga oleh lingkungan sekolah dan teman sebaya. Kedekatan interpersonal remaja mulai bergeser kepada teman sebaya. Hal ini menyebabkan remaja rentan terhadap perilaku negatif, salah satunya perilaku penyalahgunaan Napza. Dampak dari perilaku penyalahgunaan Napza tidak hanya terhadap kesehatan remaja, tetapi juga terhadap hubungan dalam keluarga, hubungan sosial dan prestasi belajar. Untuk mengatasi dampak tersebut, remaja perlu rehabilitasi. Keberhasilan rehabilitasi dipengaruhi oleh motivasi remaja. Metode Penelitian menggunakan studi kualitatif dengan pendekatan fenomenologi yang bertujuan untuk mengetahui motivasi remaja penyalahguna Napza dalam mengikuti program rehabilitasi. Hasil Respons remaja terhadap penyalahgunaan Napza diantaranya secara kognitif, afektif, fisiologis dan sosial sehingga memberikan dampak terhadap pendidikan, kesehatan fisik dan mental, hubungan dengan keluarga bahkan masalah hukum. Sebagian besar remaja penyalahguna Napza mengikuti rehabilitasi karena terpaksa, baik dipaksa oleh keluarga maupun karena terlibat masalah hukum. Untuk mendapatkan penanganan, remaja penyalahguna Napza memerlukan dukungan keluarga untuk mengambil keputusan untuk rehabilitasi dan memberikan dukungan selama mengikuti rehabilitasi. Tenaga kesehatan dapat meningkatkan motivasi remaja dalam mengikuti rehabilitasi dan meningkatkan dukungan keluarga melalui terapi modalitas.Kata kunci: Remaja, Penyalahgunaan Napza, Motivasi, RehabilitasiADOLESCENTS’ MOTIVATION TO PARTICIPATE IN A SUBSTANCE USE REHABILITATION PROGRAMAbstractAdolescence is a stage of development that is traversed by each individual and has a developmental task in determining self-identity. In the process of forming self-identity, adolescents are not only influenced by the family, but also by the school environment and peers. Teenage interpersonal closeness begins to shift to peers. This causes adolescents to be vulnerable to negative behavior, one of which is the behavior of drug abuse. The impact of drug abuse behavior is not only on adolescent health, but also on relationships in the family, social relations and learning achievement. To overcome this impact, adolescents need rehabilitation. The success of rehabilitation is influenced by the motivation of adolescents. Method: The study used a qualitative study with a phenomenological approach which aimed to determine the motivation of adolescent substance use in participating in a rehabilitation program. Results: The response of adolescents to drug abuse includes cognitive, affective, physiological and social so that it has an impact on education, physical and mental health, family relationships and even legal issues. Most teenagers who use drugs are forced to undergo rehabilitation, both forced by family and because of legal problems. To get treatment, teenagers who use drugs need family support to make decisions for rehabilitation and to provide support during rehabilitation. Recommendation: Health workers can increase the motivation of adolescents to follow rehabilitation and increase family support through therapy modalities.Keywords: Adolescents, Drug Abuse, Motivation, Rehabilitation

scholarly journals The Impact of Switching from Short-Term Teriparatide Treatment to Denosumab Therapy Compared with Denosumab Alone for Patients with Osteoporotic Hip Fracture: A 1-Year Follow-up Study

2020 ◽  
Author(s):  
Chan Ho Park ◽  
Jun-Il Yoo ◽  
Chang Hyun Choi ◽  
You-Sung Suh
Keyword(s):  
Hip Fracture ◽  
Mineral Density ◽  
Short Term ◽  
Short Term Treatment ◽  
T Score ◽  
The Difference ◽  
Group 2 ◽  
The Impact ◽  
Group 1

Abstract Background: Switching the prescription from bone-forming medication to resorptive agents is reportedly effective for patients with severe osteoporosis. The objective of this study is to determine the impact of implementing short-term teriparatide (TPTD) intervention before denosumab (DMab) therapy compared with DMab therapy alone for 1 year after hip fracture.Methods: TPTD was administered to 24 patients for an average of 12.1 weeks after which the intervention was switched to DMab therapy for 12 months (group 1). DMab alone was administered to 16 patients for 12 months (group 2). Bone mineral density (BMD) was evaluated before and after treatment at the 1-year follow-up. The improvement of BMD and T-score in hip and spine was compared with the levels of bone turnover marker.Results: The difference of hip BMD after osteoporosis treatment was -0.0081±0.03 in group 1 and 0.0074±0.04 in group 2 (p=0.180). The difference of spine BMD was 0.0819±0.04 in group 1 and 0.0145±0.03 in group 2 (p<0.001). BMD and T-score of the spine improved significantly in groups 1 and 2 (p < 0.001). There was no statistical difference in C-terminal telopeptide and osteocalcin level. Conclusion: Short-term TPTD administration followed by DMab alone was effective only in improving spine BMD. Short-term treatment with TPTD caused mild improvement in femur neck BMD compared with DMab alone. However, further research with a longer duration of TPTD treatment is warranted, as our findings lack statistical significance.

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