Spiritual needs of cancer patients: a qualitative study.

INTRODUCTION: Diagnosis of cancer can cause huge spiritual crisis in a person and affect different aspects of life. At this stage, patients have certain spiritual needs. AIM: This study was conducted to explain spiritual needs of cancer patients in Iran. MATERIALS AND METHODS: In this qualitative study, 18 cancer patients, referred to the Cancer Institute of Imam Khomeini Hospital in Tehran were selected using purposive sampling method, and their spiritual needs emerged out of conventional content analysis of interviews conducted with them. RESULTS: From 1850 initial codes, 4 themes (connection, peace, meaning and purpose, and transcendence) were identified that contained categories of social support, normal behavior, inner peace, seeking forgiveness, hope, acceptance of reality, seeking meaning, ending well, change of life meaning, strengthening spiritual belief, communication with God, and prayer. CONCLUSIONS: Spiritual needs of cancer patients should be recognized, realized, and considered in care of patients by the medical team. An all-out support of health system policy makers to meet patients' spiritual needs is particularly important.

Trauma Registry Data as a Policy-Making Tool: A Systematic Review on the Research Dimensions.

Objective: To review the research dimensions of trauma registry data on health policy making. Methods: PubMed and EMBASE were searched until July 2020. Keywords were used on the search process included Trauma, Injury, Registry and Research, which were searched by using appropriate search strategies. The included articles had to: 1. be extracted from data related to trauma registries; 2- be written in English; 3- define a time period and a patient population; 4- preferably have more details and policy recommendations; and 5- preferably have a discussion on how to improve diagnosis and treatment. The results obtained from the included studies were qualitatively analyzed using thematic synthesis and comparative tables. Results: In the primary round of search, 19559 studies were retrieved. According to PRISMA statement and also performing quality appraisal process, 30 studies were included in the final phase of analysis. In the final papers' synthesis, 14 main research domains were extracted and classified in terms of the policy implication and research priority. The domains with the highest frequency were "The relationship between trauma registry data and hospital care protocols for trauma patients" and "The causes of Disability Adjusted Life Years (DALYs) due to trauma". Conclusion: Using trauma registry data as a tool for policy-making could be helpful in several ways, namely increasing the quality of patient care, preventing injuries and decreasing their number, figuring out the details of socioeconomic status effects, and improving the quality of researches in practical ways. Also, follow-up of patients after trauma surgery as one of the positive effects of the trauma registry can be the focus of attention of policy-making bodies.

The First Inherited Retinal Disease Registry in Iran: Research Protocol and Results of a Pilot Study.

BACKGROUND: To describe the protocol for developing a national inherited retinal disease (IRD) registry in Iran and present its initial report. METHODS: This community-based participatory research was approved by the Ministry of Health and Medical Education of Iran in 2016. To provide the minimum data set (MDS), several focus group meetings were held. The final MDS was handed over to an engineering team to develop a web-based software. In the pilot phase, the software was set up in two referral centers in Iran. Final IRD diagnosis was made based on clinical manifestations and genetic findings. Ultimately, patient registration was done based on all clinical and non-clinical manifestations. RESULTS: Initially, a total of 151 data elements were approved with Delphi technique. The registry software went live at www. IRDReg.org based on DHIS2 open source license agreement since February 2016. So far, a total of 1001 patients have been registered with a mean age of 32.41±15.60 years (range, 3 months to 74 years). The majority of the registered patients had retinitis pigmentosa (42%, 95% CI: 38.9% to 45%). Genetic testing was done for approximately 20% of the registered individuals. CONCLUSION: Our study shows successful web-based software design and data collection as a proof of concept for the first IRD registry in Iran. Multicenter integration of the IRD registry in medical centers throughout the country is well underway as planned. These data will assist researchers to rapidly access information about the distribution and genetic patterns of this disease.

Iranian Registry of Crohn's and Colitis: study profile of first nation-wide inflammatory bowel disease registry in Middle East.

BACKGROUND/AIMS: A recent study revealed increasing incidence and prevalence of inflammatory bowel disease (IBD) in Iran. The Iranian Registry of Crohn's and Colitis (IRCC) was designed recently to answer the needs. We reported the design, methods of data collection, and aims of IRCC in this paper. METHODS: IRCC is a multicenter prospective registry, which is established with collaboration of more than 100 gastroenterologists from different provinces of Iran. Minimum data set for IRCC was defined according to an international consensus on standard set of outcomes for IBD. A pilot feasibility study was performed on 553 IBD patients with a web-based questionnaire. The reliability of questionnaire evaluated by Cronbach's α. RESULTS: All sections of questionnaire had Cronbach's α of more than 0.6. In pilot study, 312 of participants (56.4%) were male and mean age was 38 years (standard deviation=12.8) and 378 patients (68.35%) had ulcerative colitis, 303 subjects (54,7%) had college education and 358 patients (64.74%) were of Fars ethnicity. We found that 68 (12.3%), 44 (7.9%), 13 (2.3%) of participants were smokers, hookah and opium users, respectively. History of appendectomy was reported in 58 of patients (10.48%). The most common medication was 5-aminosalicylate (94.39%). CONCLUSIONS: To the best of our knowledge, IRCC is the first national IBD registry in the Middle East and could become a reliable infrastructure for national and international research on IBD. IRCC will improve the quality of care of IBD patients and provide national information for policy makers to better plan for controlling IBD in Iran.

Psychometric Properties of the Farsi Version of "Spiritual Needs Questionnaire" for Cancer Patients in Iran: A Methodological Study

Background and objectives: Spiritual needs are very important requirements to cancer patients. A valid and reliable instrument is needed for evaluation. This study was conducted to psychometrically evaluate a Spiritual Needs Questionnaire (SpNQ) for cancer patients in Iran. Methods: In this study, the methodology and psychometric properties of the Farsi version of the SpNQ (Büssing et al., (2010)) were evaluated, based on the model proposed by Wilde et al., (2005). The study population included cancer patients referred to the largest referral center in Iran. Some 400 subjects were selected. Then, the content, face and construct validity, as well as the internal consistency and reliability of the Farsi version were assessed. Findings: In the confirmatory factor analysis, the original four-factor version with 19 phrases was not confirmed. Subsequently, an exploratory factor analysis (EFA) was carried out in which phrases were included in three dimensions (peace and active giving, religion, and existence) that explained 48.1% of the variance. Later, a confirmatory factor analysis (CFA) was conducted, which showed a good fit of the model (CFI=0.94, GFI=0.94, RMSEA=0.071, and AGFI=0.96). Cronbach's alpha was α=0.91 for the whole SpNQ. Cronbach's alpha values ranged from 0.76 to 0.86 for the three factors. The intra-class correlation coefficient was ICC=0.82 between two tests performed with a two-week interval. Conclusion: The modified Farsi version of the SpNQ shows good psychometric properties for patients and can be used to investigate the spiritual needs of Iranian cancer patients.

Pediatric Palliative Care in Iran: Applying Regionalization of Health Care Systems

Background: Establishing palliative care services is a priority in the health system of Iran. Considering the necessity of integrating these services into the health system, this study aimed to explore the stakeholders' perceptions about the provision of a conceptual framework for palliative care services for children with cancer according to the health system in of Iran. Methods: The present qualitative study was conducted through in-depth semi-structured interviews held with 29 participants including palliative care specialists, policy-makers, health care providers, the parents of children with cancer selected through purposive sampling, between August 2016 and February 2017. Interviews continued until saturation of data. All interviews were recorded, transcribed and analyzed using MAXQDA10 software. Results: The codes extracted from interviews produced the main theme " classes of palliative care services" with the two main categories "comprehensive care" including, strengthening family shelter, maintaining the child in a familiar environment, achieving stability and "establishing social justice" including, easy access to services, financial relief and quality care. Conclusion: Presenting a framework based on level of palliative care services, the findings of this study paves the way for integrating these services into Iranian health system.

Psychometric properties of the Persian version of satisfaction with care EORTC-in-patsat32 questionnaire among Iranian cancer patients.

BACKGROUND: Cancers impose an increasing burden on health of the populations and individuals, but little is known about cancer patient satisfaction with care. The aim of this study was to assess the psychometric properties of the Persian version of European Organisation for Research and Treatment of Cancer (EORTC) In-Patsat32, as a recently developed questionnaire to assess cancer patient satisfaction with care and information provided during hospital admission. MATERIALS AND METHODS: Complying with EORTC protocols, the Persian version of Inpatsat32 was translated and piloted in a small group of patients, then applied to 380 cancer patients admitted to different oncology wards in Tehran. Validity (convergent, discriminant, and divergent) and reliability of the tool was assessed through using multitrait analysis, factor analysis, intraclass correlations, Chronbach's alpha and test-retest (on a sample of 70 patients). RESULTS: Good acceptance and high sensitivity of the questionnaire with low floor and ceiling effects were recognized, indicating power of the instrument to detect differences between groups with heterogeneous levels of satisfaction. Multitrait scaling analyses supported the convergent validity of the majority of scales (correlation coefficient >0.4) and favorable discriminant validity (item own scale correlation >0.8). There was no correlation between In-patsat32 scales and the EORTC-C30, which measures different concepts, confirming divergent validity of the tool. Internal consistency for all domains was high (α>0.70) except for the hospital access score and the test-retest reliability was excellent (r=0.86-0.96). There was a weak responsiveness to change except for nurses technical skills. Principle component analysis confirmed five domains with much improved internal consistency (α>0.9). CONCLUSIONS: The Persian version of the EORTC-in-patsat32 module is a reliable and valid instrument to measure cancer patient satisfaction with care received during their hospitalization period and can be utilized in clinical cancer research.

Prognostic value of lymph node ratios in node positive rectal cancer treated with preoperative chemoradiation.

BACKGROUND: To investigate the impact of the lymph node ratio (LNR) on the prognosis of patients with locally advanced rectal cancer undergoing pre-operative chemoradiation. METHODS: Clinicopathologic and follow up data of 128 patients with stage III rectal cancer who underwent curative resection from 1996 to 2007 were reviewed. The patients were divided into two groups according to the lymph node ratio: LNR ≤ 0.2 (n=28), and >0.2 (n=100). Kaplan-Meier and the Cox proportional hazard regression models were used to evaluate the prognostic effects according to LNR. RESULTS: Median numbers of lymph nodes examined and lymph nodes involved by tumour were 10.3 (range 2-28) and 5.8 (range 1-25), respectively, and the median LNR was 0.5 (range, 0-1.6). The 5-year survival rate significantly differed by LNR (≤ 0.2, 69%; >0.2, 19%; Log-rank p value < 0.001). LNR was also a significant prognostic factor of survival adjusted for age, sex, post-operative chemotherapy, total number of examined lymph nodes, metastasis and local recurrence (≤ 0.2, HR=1; >0.2, HR=4.8, 95%CI=2.1-11.1) and a significant predictor of local recurrence and distant metastasis during follow-up independently of total number of examined lymph node. CONCLUSIONS: Total number of examined lymph nodes and LNR were significant prognostic factors for survival in patients with stage III rectal cancer undergoing pre-operative chemoradiotherapy.