How do the information needs of cancer patients differ at different stages of the cancer journey? A cross-sectional survey

Abstract Background Studies in the West have demonstrated that appropriate informational support is a vital component of cancer care, with positive effects on both patients and their informal caregivers. Since little is known about the information needs of advanced cancer patients and informal caregivers in China, where ‘silence as virtue’ is much more valued and the communication style is less open, this study was therefore conducted to elaborate the information needs of advanced cancer patients and informal caregivers as well as to explore their perceptions and experiences regarding their unmet information needs in the Chinese context. Methods This sub-study of a previous cross-sectional survey utilized a qualitative descriptive study design. The approach involved semi-structured interviews that followed an interview guide to collect data. Eligible participants were the advanced cancer patients and informal caregivers who had participated in the previous cross-sectional survey and reported unmet information needs. Each interview was audio-recorded and transcribed verbatim. Descriptive content analysis was used to analyze the data. Results Seventeen advanced cancer patients and 15 informal caregivers with unmet information needs participated in the semi-structured interviews, with ages ranging from 32 to 63 years old for patients and from 32 to 70 for informal caregivers. Four categories were extracted from the interviews with the patients and caregivers: (1) types of unmet information needs; (2) reasons for information needs not being met; (3) preferences for the provision of information; and (4) meaning and role of information. Each category had two to four sub-categories for both the patients and the caregivers, which were similar but not completely the same. Conclusion The findings indicated that the provision of appropriate information could promote informed decision-making and greater satisfaction with treatment options, reductions in psychological disturbances, and enhanced confidence and ability in self-management and capacity in caregiving. Moreover, information on Traditional Chinese Medicine and food therapy should be increased, particularly for patients at the follow-up stage, while the amount of information on prognosis should be flexible as it could increase patients’ and caregivers’ psychological burden. Healthcare professionals were the most preferred information provider, although their heavy workload resulted in time constraints. In this case, they should provide information to patients and caregivers together as a ‘whole unit.’ At the same time, the value of separate conversations should also be recognized as some caregivers preferred to conceal unpleasant information from the patient.

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Information needs of Asian and White British cancer patients and their families in Leicestershire: a cross-sectional survey

British Journal of Cancer ◽

10.1038/sj.bjc.6601774 ◽

2004 ◽

Vol 90 (8) ◽

pp. 1474-1478 ◽

Cited By ~ 28

Author(s):

D Muthu Kumar ◽

R P Symonds ◽

S Sundar ◽

K Ibrahim ◽

B S P Savelyich ◽

...

Keyword(s):

Cancer Patients ◽

Information Needs ◽

Cross Sectional Survey ◽

Cross Sectional

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Information needs of cancer patients in west Scotland: cross sectional survey of patients' views

BMJ ◽

10.1136/bmj.313.7059.724 ◽

1996 ◽

Vol 313 (7059) ◽

pp. 724-726 ◽

Cited By ~ 371

Author(s):

C. Meredith ◽

P. Symonds ◽

L. Webster ◽

D. Lamont ◽

E. Pyper ◽

...

Keyword(s):

Cancer Patients ◽

Information Needs ◽

Cross Sectional Survey ◽

Cross Sectional

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Uncertainty about cellulitis and unmet patient information needs: a mixed methods study

British Journal of General Practice ◽

10.3399/bjgp18x697349 ◽

2018 ◽

Vol 68 (suppl 1) ◽

pp. bjgp18X697349

Author(s):

Anna Lalonde ◽

Emma Teasdale ◽

Ingrid Muller ◽

Joanne Chalmers ◽

Peter Smart ◽

...

Keyword(s):

Mixed Methods ◽

Information Needs ◽

Qualitative Data ◽

Information Provision ◽

Mixed Methods Study ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Face To Face ◽

Patient Information Needs ◽

History Of

BackgroundCellulitis is a common painful infection of the skin and underlying tissues that recurs in approximately a third of cases. Patients’ ability to recover from cellulitis or prevent recurrence is likely to be influenced by their understanding of the condition.AimTo explore patients’ perceptions of cellulitis and their information needs.MethodMixed methods study comprising semi-structured, face-to-face interviews and cross-sectional survey, recruiting through primary care, secondary care and advertising. Adults aged 18 or over with a history of cellulitis (first or recurrent) were invited to complete a survey, take part in an interview or both. Qualitative data was analysed thematically.ResultsThirty interviews were conducted between August 2016 and July 2017. Qualitative data revealed low prior awareness of cellulitis, uncertainty around diagnosis, concern/surprise at the severity of cellulitis, and perceived insufficient information provision. People were surprised they had never heard of the condition and that they had not received advice or leaflets giving self-care information. Some sought information from the internet and found this bewildering. Two hundred and forty surveys were completed (response rate 17%). These showed that, while most people received information on the treatment of cellulitis (60.0%, n = 144), they reported receiving no information about causes (60.8%, n = 146) or prevention of recurrence (73.3%, n = 176).ConclusionThere is a need for provision of basic information for people with cellulitis, particularly being informed of the name of their condition, how to manage acute episodes, and how to reduce risk of recurrence.

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The impact of an ostomy on older colorectal cancer patients: a cross-sectional survey

International Journal of Colorectal Disease ◽

10.1007/s00384-016-2665-8 ◽

2016 ◽

Vol 32 (1) ◽

pp. 89-94 ◽

Cited By ~ 13

Author(s):

N. M. Verweij ◽

M. E. Hamaker ◽

D. D. E. Zimmerman ◽

Y. T. van Loon ◽

F. van den Bos ◽

...

Keyword(s):

Colorectal Cancer ◽

Cancer Patients ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Colorectal Cancer Patients ◽

The Impact

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Patients’ knowledge and awareness of safe handling of oral anticancer agents at Sultan Qaboos University Hospital in Oman

Journal of Oncology Pharmacy Practice ◽

10.1177/10781552211056238 ◽

2021 ◽

pp. 107815522110562

Author(s):

Moataz M Hassan ◽

Dhabya Al-Marzooq ◽

Hanan Al-Habsi ◽

Amna Al-Hashar ◽

Murtadha Al-Khabori ◽

...

Keyword(s):

Cancer Patients ◽

Anticancer Agents ◽

Oral Chemotherapy ◽

University Hospital ◽

National Guidelines ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Safe Handling ◽

Chemotherapy Drugs ◽

Oral Anticancer Agents

Background Safe handling of oral anticancer agents is of great concern. There is a lack of clear, national guidelines on how patients can safely handle and dispose of unwanted medications. We aimed to evaluate the safe handling, storage, and disposal of oral anticancer drugs among cancer patients and caregivers at home. Method This cross-sectional survey of adult cancer patients (or their adult caregivers) used a closed-ended questionnaire from May 2019 to March 2020. Results A total of 257 patients (50 ± 15 years; range: 18–93 years) were enrolled; however, only 91% (233/257) reported self-administering oral anticancer medications. Caregivers were more likely to administer oral anticancer agents for patients ≥60 years than those <40 years old (63% vs. 8%; P = 0.001). Most patients (52%; 133/257) did not wash their hands after administering the drug; 74% (164/222) of the respondents reported that their medications were kept in a bedroom cabinet, while 18% (40/222) stored their medications in a refrigerator, and 5% (12/222) in a kitchen cabinet. A total of 55% (68/124) of patients returned their excess oral chemotherapy medications to the hospitals; however, 36% (45/124) disposed of their unused oral chemotherapy drugs in a household garbage container. Conclusion While two-thirds of patients stored their oral anticancer medications properly, more than half used inappropriate handling procedures. Disposal practices were inconsistent and did not adhere to the reported international guidelines.

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Quality of life after different procedures for regional control in oral cancer patients: cross-sectional survey

Clinical Otolaryngology ◽

10.1111/coa.12502 ◽

2016 ◽

Vol 41 (3) ◽

pp. 228-233 ◽

Cited By ~ 12

Author(s):

T.M. Govers ◽

W.H. Schreuder ◽

W.M.C. Klop ◽

J.P.C. Grutters ◽

M.M. Rovers ◽

...

Keyword(s):

Quality Of Life ◽

Oral Cancer ◽

Cancer Patients ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Regional Control ◽

Oral Cancer Patients

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Physical activity interests and preferences of cancer patients with brain metastases: a cross-sectional survey

BMC Palliative Care ◽

10.1186/s12904-016-0083-x ◽

2016 ◽

Vol 15 (1) ◽

Cited By ~ 8

Author(s):

Sonya S. Lowe ◽

Brita Danielson ◽

Crystal Beaumont ◽

Sharon M. Watanabe ◽

Kerry S. Courneya

Keyword(s):

Physical Activity ◽

Brain Metastases ◽

Cancer Patients ◽

Cross Sectional Survey ◽

Cross Sectional

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Burden of Visits for Treating Side Effects of Chemotherapy or Radiotherapy in Cancer Patients.

Blood ◽

10.1182/blood.v108.11.5518.5518 ◽

2006 ◽

Vol 108 (11) ◽

pp. 5518-5518

Author(s):

David H. Henry ◽

Shawn M. Wade ◽

Mariana Servin ◽

William Hershfield

Keyword(s):

Side Effects ◽

Healthcare Professional ◽

Cancer Patients ◽

Full Time ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Part Time ◽

Receive Treatment ◽

Doctor's Office ◽

To Receive

Abstract INTRODUCTION: The time incurred in seeking care for the treatment of side effects of chemotherapy (CT) or radiotherapy (RT) can result in lost productivity and resulting lost wages for cancer patients (pts) and their caregivers. The purpose of this study was to assess the amount of time spent by pts and caregivers to seek treatment for side effects of CT/RT and to examine productivity losses associated with such visits. METHODS: A cross-sectional survey was conducted from April to May 2006 using a random sample of pts from a chronic illness panel of 550,233 pts. Inclusion criteria were being at least 18 years of age, diagnosed with cancer, and receiving CT and/or RT either currently or during the 12 months prior to participating in the study. Percentages and means were used to calculate descriptive statistics. RESULTS: A total of 1,569 cancer pts were surveyed: 1,302 pts online and 267 pts by telephone. No significant differences were found between phone and online respondents. Of the pts currently receiving CT and/or RT (N=814), a total of 249 pts received treatment for side effects of CT/RT. The total time spent per visit to receive treatment for side-effects of CT/RT was approximately 5 hrs/visit including preparation time, travel time, and time spent at the clinic. Approximately one-half (54%) of the 249 patients currently receiving treatment for side effects of CT/RT were employed full-time (44%) or part-time (10%). Among employed patients currently receiving treatment for side effects of CT/RT, the mean number of work days missed as a result of visits for the treatment of CT/RT related side effects was 20 days per year. The primary reason for continuing to work during cancer treatment was financial need, reported by 59% of patients. Approximately 83% of all patients indicated that a caregiver generally accompanied them on their visits to the doctor’s office, clinic, or hospital to receive treatment for side effects of CT/RT. Seven out of ten caregivers (68%) were reported as being employed either full-time (62%) or part-time (6%). CONCLUSIONS: Time related burden for patients receiving treatment for side effects of CT/RT and their caregivers is significant. Reduction in frequency of such visits is important from the standpoint of patients’ economic livelihood and can stand to benefit employers and society. Table 1. Time Spent on Healthcare Provider Visits for Treatment of Side Effects Related to Chemotherapy and/or Radiation (N=249) Activity (per visit) Minutes Spent (mean) Standard Deviation Minutes Spent (median) Preparing to go to the doctor’s office, clinic or hospital 81 127 55 Travel to and from the doctor’s office, clinic, or hospital 102 188 58 Waiting at the doctor’s office, clinic, or hospital to see the doctor or another healthcare professional 64 72 39 Seeing the doctor or another healthcare professional 64 75 43 Total 311 380 210

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Impact of skeletal related events (SREs) on health-related quality of life (HRQoL) and healthcare resource utilization (HRU) in prostate cancer patients with bone metastases (BM).

Journal of Clinical Oncology ◽

10.1200/jco.2013.31.15_suppl.e16046 ◽

2013 ◽

Vol 31 (15_suppl) ◽

pp. e16046-e16046

Author(s):

Jorge Arellano ◽

Kristina S Chen ◽

Carolyn Atchison ◽

Alex Rider ◽

Andrew Worsfold ◽

...

Keyword(s):

Prostate Cancer ◽

Cancer Patients ◽

Negative Impact ◽

Underlying Disease ◽

Cord Compression ◽

Healthcare Resource Utilization ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Cancer Disease ◽

The Impact

e16046 Background: Advanced prostate cancer often leads to the development of BM and as a result SREs. Treatment and management of SREs, as well as the underlying disease, influences the patient’s HRQoL and HRU. We evaluated the impact of SREs on HRQoL (FACT-P) and HRU in patients with BM. Methods: Data were extracted from the Adelphi Prostate Cancer Disease-Specific Programme (DSP), a cross-sectional survey of 150 urologists and oncologists and their prostate cancer patients conducted from March to June 2012 in the US. Each specialist completed comprehensive record forms on 12 of their patients being treated for prostate cancer. Patients were invited to complete a questionnaire, which included the FACT-P HRQoL instrument. Patients were stratified by SRE experience to assess the impact of SRE on patients with BM. SRE was defined as an event of bone radiation, bone surgery, fracture, or spinal cord compression. Results: Data were collected from 1,749 prostate cancer patients, of which 941 were identified with BM; SRE status was recorded in 499 BM patients (Table). HRQoL was significantly lower in patients experiencing SREs, while the rate of consultations and likelihood of being hospitalized was significantly higher. Conclusions: SREs result in a significant economic burden on the healthcare system and negative impact on HRQoL in prostate cancer patients with BM. [Table: see text]

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