{"title":"A systematic review of psychometric properties of the Pediatric Quality of Life Inventory™ 4.0 generic core scales: in pediatric cancer patients and survivors","authors":"C. Limbers, Madeline R Larson","doi":"10.1080/23809000.2016.1163223","DOIUrl":"https://doi.org/10.1080/23809000.2016.1163223","url":null,"abstract":"ABSTRACT Background: The Pediatric Quality of Life Inventory™ (PedsQL) Measurement Model was developed to assess generic and disease-specific health-related quality of life (HRQOL) in pediatric populations. To our knowledge, there are currently no systematic reviews of studies that have examined the psychometric properties of the PedsQL 4.0 Generic Core Scales in pediatric patients with cancer and survivors. We sought to answer the question, ‘What is the reliability, validity, feasibility, range of measurement, and responsiveness of the PedsQL 4.0 Generic Core Scales in pediatric cancer patients and survivors?’ Method: Full-text articles published between 2001 and February 2016 were included in the review if they assessed reliability, validity, feasibility, range of measurement, and/or the responsiveness of the PedsQL 4.0 Generic Core Scales in a pediatric oncology sample or sample of survivors. Two independent reviewers conducted the search in the databases PsycINFO and PubMed which resulted in 16 studies meeting full inclusion criteria. Results: The studies reviewed were all published between 2002 and 2014 and were conducted across 12 different countries. The majority of the studies reported Cronbach’s alphas that met or exceeded 0.70 for parent proxy-report and child self-report 8–18 years. Almost all of the studies assessing construct validity found children with cancer and their parents reported statistically significant lower HRQOL than healthy children across the PedsQL domains. With the exception of the 5–7 year old child self-report form and the School Functioning Scale across age forms, the studies in our review reported excellent feasibility, with less than 1% of missing items. Minimal to no floor effects were reported. Ceiling effects were found in all of the studies that assessed range of measurement, and were most common for the PedsQL Physical Functioning and Social Functioning domains. Conclusions: Taken as a whole, the studies in our review demonstrate acceptable psychometric properties of the PedsQL 4.0 Generic Core Scales in pediatric patients with cancer and survivors. Additional validation studies are warranted to establish test-retest reliability and responsiveness over time of the PedsQL 4.0 Generic Core Scales in this population.","PeriodicalId":91681,"journal":{"name":"Expert review of quality of life in cancer care","volume":"1 1","pages":"145 - 152"},"PeriodicalIF":0.0,"publicationDate":"2016-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/23809000.2016.1163223","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"60122025","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
L. Steur, R.H.E. Kolk, F. Mooij, R. de Vries, M. Grootenhuis, G. Kaspers, R. V. van Litsenburg
{"title":"The prevalence and risk factors of sleep problems in pediatric oncology: its effect on quality of life during and after cancer treatment","authors":"L. Steur, R.H.E. Kolk, F. Mooij, R. de Vries, M. Grootenhuis, G. Kaspers, R. V. van Litsenburg","doi":"10.1080/23809000.2016.1168265","DOIUrl":"https://doi.org/10.1080/23809000.2016.1168265","url":null,"abstract":"ABSTRACT This review aims to describe the prevalence, types and risk factors of sleep problems in children undergoing cancer treatment and in childhood cancer survivors. Furthermore, the relation between sleep and quality of life (QoL) was described. In children undergoing treatment sleep problems were more common compared to norms and controls. In survivors results were more inconsistent and in some studies even less sleep problems were reported. In both populations various sleep problems were reported (such as night awakenings, bedtime resistance, and daytime sleepiness). Several demographic, disease and treatment related factors were associated with sleep outcomes. Impaired sleep was associated with poorer physical, psychosocial, and cancer-related QoL. Sleep was assessed with a variety of measurements, all measuring different sleep constructs, limiting the formulation of generalizable conclusions. Therefore, a standardized way to assess sleep in different age categories in pediatric oncology is mandatory.","PeriodicalId":91681,"journal":{"name":"Expert review of quality of life in cancer care","volume":"1 1","pages":"153 - 171"},"PeriodicalIF":0.0,"publicationDate":"2016-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/23809000.2016.1168265","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"60122039","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Medical management of chemotherapy-induced peripheral neuropathy: a concise review focusing on the past 5 years","authors":"Rosa M. Michel Ortega, S. Lindhorst","doi":"10.1080/23809000.2016.1161490","DOIUrl":"https://doi.org/10.1080/23809000.2016.1161490","url":null,"abstract":"ABSTRACT Even though chemotherapy has improved survival in patients with different malignancies, it has short-term side effects as well as toxicity in survivors. Chemotherapy-induced peripheral neuropathy (CIPN) is encountered with neurotoxic chemotherapy agents. It has proven difficult to prevent and, once it is already established, management becomes more challenging. Rationale for medications used to treat CIPN are based on extrapolation of their efficacy in other types of neuropathic pain, whereas duloxetine is the only medication that has a moderate strength of recommendation after a phase III double-blind, randomized controlled trial was published on treatment of CIPN.","PeriodicalId":91681,"journal":{"name":"Expert review of quality of life in cancer care","volume":"1 1","pages":"121 - 126"},"PeriodicalIF":0.0,"publicationDate":"2016-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/23809000.2016.1161490","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"60122420","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Patient satisfaction with treatment of non-melanoma skin cancer","authors":"M. Inyang, Laura Doerfler, L. Strowd","doi":"10.1080/23809000.2016.1168264","DOIUrl":"https://doi.org/10.1080/23809000.2016.1168264","url":null,"abstract":"ABSTRACT Skin cancer is the most common cancer in the United States most of which are non-melanoma skin cancers (NMSC). There are many approaches to the management of NMSC. Given the increasing focus on patient centered care, patient satisfaction is an important outcome to guide treatment selection. This article systematically reviews the published literature regarding patient satisfaction in the treatment of NMSC. A total of 747 records were identified in the initial Pubmed search. Twenty-six evaluated patient satisfaction, and five were literature reviews or meta-analyses. Patients were generally satisfied with cosmetic outcome regardless of treatment modality. Excluding cosmesis, factors affecting patient satisfaction were not commonly assessed. Patients may prefer greater treatment time and perceived physician effort. The Skin Cancer Index (SCI) along with a modified Likert scale is the most applicable to NMSC. Future studies should focus on other aspects of patient satisfaction and develop a standardized comprehensive patient satisfaction assessment.","PeriodicalId":91681,"journal":{"name":"Expert review of quality of life in cancer care","volume":"1 1","pages":"173 - 180"},"PeriodicalIF":0.0,"publicationDate":"2016-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/23809000.2016.1168264","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"60122031","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Fungating breast cancer and other malignant wounds: epidemiology, assessment and management","authors":"Sok Yuen Beh, L. Leow","doi":"10.1080/23809000.2016.1162660","DOIUrl":"https://doi.org/10.1080/23809000.2016.1162660","url":null,"abstract":"ABSTRACT Malignant fungating wounds are often associated with advanced malignancy especially breast cancer. There is no consensus regarding the optimal management of thiscommon condition. The ideal management of these patients requires a multidisciplinary and holistic approach. Malodour is one of the most distressing symptom and the use of topical metronidazole is commonly cited. Pain management requires an accurate assessment to treat the underlying cause and the WHO analgesic ladder is often used to guide pharmacologic therapy. Bleeding fungating wounds can be treated with natural hemostats, sclerosing agents, coagulants or other topical agents. Highly exudative wounds may require the use of specialized dressings such as alginates, hydrofibre and foam dressings or alternatively, highly absorbent pads. These recommendations are based on anecdotal evidence and small underpowered studies. Hence, larger clinical studies are warranted to determine the optimal management strategies for malignant fungating wounds.","PeriodicalId":91681,"journal":{"name":"Expert review of quality of life in cancer care","volume":"1 1","pages":"137 - 144"},"PeriodicalIF":0.0,"publicationDate":"2016-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/23809000.2016.1162660","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"60122462","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Measurement properties of the Functional Assessment of Cancer Therapy-Breast may depend upon the education levels of patients","authors":"Y. Cheung, R. Ng, N. Luo, C. Lee","doi":"10.1080/23809000.2016.1154444","DOIUrl":"https://doi.org/10.1080/23809000.2016.1154444","url":null,"abstract":"ABSTRACT Background: Education level may vary in older cancer patients. This study aims to compare the measurement properties of the Functional Assessment of Cancer Therapy-Breast (FACT-B) when self-administered by breast cancer patients with various education levels. Methods: An observational study of 244 Singaporean breast cancer patients who self-administered the instrument. FACT-General and FACT-B scores were assessed for the discriminatory ability, responsiveness to change and test–retest reliability. We hypothesized that patients with better performance status would result in higher FACT-General and FACT-B scores. Regression models were constructed, and relative precisions were also examined. Results: The mean baseline FACT-General and FACT-B scores monotonically decreased with performance status in the higher but not lower educated group (relative precision = 1.13 and 1.08, respectively). Stronger responsiveness to deterioration in quality of life were found in the higher (each p < 0.001) than lower educated group (p = 0.146 and 0.245). Larger intra-class correlation coefficient of the FACT scores (each p < 0.05) and smaller variability in the Bland-Altman plots indicated better test–retest reliability in higher educated group. Conclusion: Measurement properties may be reduced when the instrument is self-administered by lower educated cancer patients.","PeriodicalId":91681,"journal":{"name":"Expert review of quality of life in cancer care","volume":"1 1","pages":"181 - 186"},"PeriodicalIF":0.0,"publicationDate":"2016-03-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/23809000.2016.1154444","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"60122374","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Counselling preventative behaviours in the melanoma patient","authors":"L. Strowd","doi":"10.1080/23809000.2016.1135034","DOIUrl":"https://doi.org/10.1080/23809000.2016.1135034","url":null,"abstract":"Melanoma is a malignancy of the pigment producing melanocytes in the skin which affects approximately 2% of adults in the United States. In 2015, there were an estimated 74,000 new cases of invasive melanoma in the United States. This estimate is likely lower than the actual incidence as many melanoma in situ and superficial melanomas may not be reported to the National Cancer Institute Surveillance, Epidemiology, and End Results Program.[1] Five-year survival rate for patients with thin melanomas is approximately 95%, while primary tumors greater than 4.0 mm in depth have a 67% 5-year survival rate. There is no effective treatment once distant metastasis has occurred, with 5-year survival rates as low as 19% for patients with cutaneous or subcutaneous metastases.[2] In a study of 3310 patients with primary melanoma, they had a 25 times increased risk for developing a second primary melanoma compared to the general population.[3] Unlike the majority of other malignancies, development of skin cancer correlateswithmodifiable risk factors. History of sunburns and chronic intermittent sun exposure both have a causal relationship with the development of melanoma.[4] Multiple large studies have also identified intrinsic risk factors in the development of melanoma. These include light hair and eye color, freckling, increased number of melanocytic nevi, history of dysplastic nevi, and firstdegree family members with melanoma.[5,6] There is a huge potential role of physician counseling in the prevention of melanoma. The following goals should be considered when providing patient education on melanoma: awareness of genetic risk factors for melanoma development, impact of tanning behaviors, risk of significant morbidity and mortality from melanoma, and importance of skin self-examination (SSE). The physician should be cognizant of the patient’s level of education, baseline medical knowledge, perceived threat of their behaviors and the consequences of developing melanoma, and existing barriers to behavior change. This article will review the evidence behind incorporation of each of these counseling components in detail. The EDIFICE Melanoma study was a large French study polling 1502 adults on their perceived risk of melanoma. The study asked about the presence of the following risk factors: light skin, family history of melanoma, and number of nevi. Twenty-five percent of participants had one or more intrinsic risk factors for melanoma. Seventy-three percent of subjects had a true correlation between perception of risk and actual risk. Ten percent had an overestimation of level of risk, and 17% had an underestimation of risk. In the population of subjects who underestimated their level or risk, they had a significantly lower level of education compared to the other subgroups and a trend toward more frequent use of tanning beds. Surprisingly, the group who overestimated their risk of melanoma used significantly less sunscreen than those who had a lower perce","PeriodicalId":91681,"journal":{"name":"Expert review of quality of life in cancer care","volume":"1 1","pages":"1 - 4"},"PeriodicalIF":0.0,"publicationDate":"2016-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/23809000.2016.1135034","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"60122228","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
A. Fay, R. Moreira, P. N. Nunes Filho, C. Albuquerque, C. Barrios
{"title":"The management of immune-related adverse events associated with immune checkpoint blockade","authors":"A. Fay, R. Moreira, P. N. Nunes Filho, C. Albuquerque, C. Barrios","doi":"10.1080/23809000.2016.1142827","DOIUrl":"https://doi.org/10.1080/23809000.2016.1142827","url":null,"abstract":"ABSTRACT Immunotherapy has become an important component of modern oncology therapy. Recently methods of immune checkpoint blockade include; anti-CTLA-4, anti-PD-1/PD-L1, or a combination of both therapies and have been developed with the objective of restoring immune system T-cell responses against cancer. This strategy has demonstrated important clinical activity in different tumor types and is currently approved for the treatment of several malignancies worldwide. However, the experience gathered so far with this strategy has revealed emerging immune-related adverse events (irAEs) that deserve particular attention. irAEs can affect any organ or system and require adequate diagnosis, rapid recognition and appropriate management as they may have an impact on the outcome of patients receiving these therapies.","PeriodicalId":91681,"journal":{"name":"Expert review of quality of life in cancer care","volume":"1 1","pages":"89 - 97"},"PeriodicalIF":0.0,"publicationDate":"2016-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/23809000.2016.1142827","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"60122345","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Neurocognition and quality-of-life in brain metastasis patients who have been irradiated focally or comprehensively","authors":"A. Pham, S. Lo, A. Sahgal, E. Chang","doi":"10.1080/23809000.2016.1140556","DOIUrl":"https://doi.org/10.1080/23809000.2016.1140556","url":null,"abstract":"ABSTRACT As patients are living longer with metastatic disease, preservation of quality of life (QoL) becomes an important goal as treatment shifts from curative to palliative intent. Stereotactic radiosurgery (SRS) has emerged as an alternative to whole brain radiation therapy (WBRT) in the treatment of brain metastases. The decision between SRS and WBRT balances the competing risks of neurocognitive side effects, which are higher in patients treated with WBRT, with risks of intracranial recurrence, which are higher in patients treated with SRS alone. Within this review, we summarize the types of neurocognitive and QoL tests used in clinical trials, and the randomized control trials (RCTs) that evaluated the impact of radiation therapy (RT) on neurocognition and QoL.","PeriodicalId":91681,"journal":{"name":"Expert review of quality of life in cancer care","volume":"1 1","pages":"45 - 60"},"PeriodicalIF":0.0,"publicationDate":"2016-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/23809000.2016.1140556","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"60122296","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Chemotherapy-induced premature ovarian failure and its prevention in premenopausal breast cancer patients","authors":"F. Poggio, A. Levaggi, M. Lambertini","doi":"10.1080/23809000.2016.1139458","DOIUrl":"https://doi.org/10.1080/23809000.2016.1139458","url":null,"abstract":"Breast cancer accounts for more than one quarter of all malignant tumors diagnosed in women of reproductive age: every year, more than 25,000 new cases of invasive breast carcinoma are diagnosed in patients under the age of 45 years in the United States [1]. This is a relatively small proportion (approximately 11%) of all new cases of breast tumors; however, breast cancer in young women represents a public health problem due to both medical and psychosocial challenges unique to or accentuated by their age [2]. Due to the fact that young women with breast cancer have an increased risk of presenting with biologically aggressive types of tumors, the majority are candidates to receive antineoplastic treatments that include the use of chemotherapy [3]. A possible side effect of chemotherapy in premenopausal patients is the occurrence of premature ovarian failure (POF), resulting in temporary or permanent amenorrhea. Even in the presence or resumed regular menses after chemotherapy, patients are still at risk of developing early menopause due to the damage of cytotoxic therapy to their ovarian reserve [4]. The effects of chemotherapy on ovarian function are variable and are strongly affected by patients’ age at the time of treatment, type, and dose of chemotherapy [4]. The most common chemotherapy regimens used in the adjuvant or neoadjuvant treatment of breast cancer are associated with an intermediate risk of developing POF (40–60%) in patients aged 30–39 years; however, the same regimens are associated with a high risk of developing POF (more than 80%) in women older than 40 and a low risk (less than 20%) in those under the age of 30 [4]. The development of chemotherapy-induced POF is associated with improved survival outcomes in premenopausal breast cancer patients [5]. However, the loss of ovarian function negatively impacts on global health of young breast cancer survivors being associated with several side effects, such as hot flashes, sweats, breast pain or sensitivity, vaginal dryness, vaginal discharge, lack of sexual desire, and weight gain [6]. Moreover, strongly associated with the loss of ovarian function is the risk of infertility: fertility issues represent a major concern for young breast cancer patients and can also influence their treatment decisions [7]. Recent data from the Suppression of Ovarian Function Trial (SOFT) study demonstrated excellent survival outcomes in premenopausal breast cancer patients who resumed their ovarian function after chemotherapy and were treated with ovarian suppression for 5 years as part of adjuvant endocrine therapy [8]. Moreover, it has been recently shown that having a pregnancy after prior breast cancer diagnosis and treatment should be considered safe, also in patients with endocrine sensitive disease [9]. These findings highlight the importance of maintaining ovarian function and fertility of young breast cancer patients who are candidates to receive chemotherapy during their reproductive age. Em","PeriodicalId":91681,"journal":{"name":"Expert review of quality of life in cancer care","volume":"1 1","pages":"5 - 7"},"PeriodicalIF":0.0,"publicationDate":"2016-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/23809000.2016.1139458","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"60122286","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}