الفهرس 
INTRODUCTIONOnly 14 pages are availabe for public view
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Abstract
In Today’s concept of health care, the patient is a key player. The practice of medicine has become less authoritarian and more patient centered. Involvement of patient is a basic patient’s right. Considerable evidence suggests that patients involvement can improve their experience and satisfaction, and also can be effective clinically and economically. Many patients struggle to obtain process, communicate, and understand even basic health information and services. In Egypt few studies have tackled patient involvement in health care and the factors that help or stop patients from being involved.
Thus, the current aims to explore and describe qualitatively and quantitatively breast cancer patients’ and physicians’ perspectives and experience about patient involvement in cancer care, and to find the facilitating and hindering factors that might influence patient involvement from their perspectives.
Study Setting:
The study was conducted in:
- Surgery and Oncology outpatient clinics and Surgery inpatient wards at Medical Research Institute Hospital Alexandria University.
- Ayadi El-Mostakbal Cancer Care Center (Ayadi El-Mostakbal charity Foundation), Alexandria.
- Alexandria Regional Center for Women Health and Development.
- El Shark El Awsad Oncology Center, Alexandria.
Design & Method
A mixed-method exploratory sequential design was employed to provide depth and breadth to the understanding and experience of patient involvement from patients and physicians perspectives. The study was conducted on three phases: First, an exploratory inductive qualitative study (phenomenology) was done to understand the views, perceptions and experience of 30 patients in different cancer care stages and 12 physicians (6 oncologists and 6 surgeons) about patient involvement in breast cancer care through in depth - interviews. The results of qualitative study were used to construct a data collection tool to be used in the next phase.
A cross sectional descriptive quantitative study was conducted on 125 patients and 38 physicians (21 surgeons, 17 oncologists) for generalization of findings. Integration and interpretation of the results of both studies was done in the discussion phase.
Data collection
Data were collected through
1- In-depth semi-structured interviews were conducted with patients and physicians for collecting data using two developed interviewing guides. They included the personal characteristics items pertaining to the patients’ age, stage of breast cancer, educational level, employment status, and physicians’ specialty, experience years and place of
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work. They assessed views to patient involvement as regards meaning, responsibility, the extent and aspects of involvement, perceived benefits, risks, barriers, facilitators of PI and their suggestions for PI improvement.
2- Patients’ medical records: the records were reviewed to obtain data about the patient stage of cancer.
3- Structured interview questionnaire for patients. It including socioeconomic data, health profile, patients’ perceptions and experience of PI, perceived barriers of PI and PI improvement suggestions.
4- Structured Self- administrated questionnaire for physicians including Physicians’ job characteristics, perceptions and experience of PI, perceived barriers of PI and PI improvement suggestions.
Data analysis
In-depth semi-structured interviews were recorded, transcripted and loaded into qualitative data analysis software ”Atlas ti”, then analyzed using inductive thematic analysis approach. Quantitative data were collected from structured questions and analyzed using software IBM- SPSS version 21.
The main results of the study are summarized as follows:
Both patients and physicians mainly perceived PI as being well informed about their condition, sharing in care plan decisions making, and being compliant to instructions. It was generally regarded as beneficial, as it helped in better patient understanding, better management and better health outcome. The arousal of patients’ stress and fear or refusal of some recommended treatment and bothering physicians emerged as main risks of PI.
Nearly all patients were dissatisfied with their experience of poor PI in different cancer care stages starting from, receiving inadequate information about diagnosis and treatment, lack of informed decision making process, not being given enough roles in self –care, until lack of giving feedback. Similarly, most physicians were dissatisfied with the current level of PI, they indicated minimal PI in different aspects of care. They referred to patients as just being acted upon instead of playing an active role in their treatment process. The frequently mentioned aspects of PI by physicians were sharing in decision making, follow up and reporting side effects.
Patients referred to patient-, physician- and system- related facilitating and hindering factors for PI. Patient -related factors were awareness and literacy level, general health condition, education level and financial level. Physician -related factors were mainly communication skills and supportive attitude. System -related factors were human resources and bureaucracy. Similarly for physician-, patient -related factors included education level and absence of culture of PI among patient and family. Physician -related factors such as willingness to involve patient. System -related factors were having supportive system to PI through designing of patient awareness programs, setting of PI governmental agenda, following multi-disciplinary team approach, applying guidelines, and designing patient information data base.
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Patients’ suggestions directed for physicians were improving patients’ awareness level, increasing consultation time, encouraging asking questions, and patient reassurance. For policy makers they suggested designing patient and public awareness programs, improving service of cancer care center, decreasing cost of service to promote accessibility to service, and paying attention to patients’ experience for service improvement. While, Physicians suggestions focused on the system structure, they indicated that patient involvement should be one of the organization’s objectives through establishing patients data base, following the multidisciplinary cancer care treatment approach, increasing physicians number and salaries, encouraging donations and working on knowledge, attitude and practices of PI.
For quantitative results:
For patients:
“Knowing the benefits and risks of different treatments” was perceived as the most important area of PI at direct care level while “Express opinion and observations about the delivered care” was the least important PI area.
According to PI at organizational level, “Participation in the development of improvement plans” was perceived as the most important area while, “Participation in decisions with the board of directors of the healthcare institutions” was the least important area.
Around half the patients (51%) reported low level of involvement. A good percentage of patients (44.8 %) conformed that they were never involved at any phase of breast cancer care. Involvement was most reported by patients in chemotherapy phase (24.8 %) and it was least reported by patients in the hormonal phase (6.4 %).
A big percentage of patients (42.4 %) stated that they never got involved in any area of direct care. “Receiving information” and “helping other patients” were the most frequently reported areas of actual involvement (24%, 23.2% respectively) while, “giving feedback” (1.6%) was the least frequently reported area.
Half the patients (50%) showed low satisfaction with the actual level of involvement, whereas 26% of patients felt highly satisfied with the current level of involvement.
The most frequently reported patient related barrier was “Belief in physician’s ability to make the right decision” while the least reported barrier was “Cancer stigma”. The most frequently reported physician- related barrier was “Making the decision without consideration of patient’s opinion” while the least frequently perceived barrier was “Disrespect to patient”. The most reported system -related barrier was “Complex routine” while the least reported barrier was “Shortage of physicians and nurses”.
The highest rated suggestion for physicians was, “Encourage patient communication” while the least rated suggestion was “Consideration of the patient’s complain”. The highest rated suggestion for policy makers was “Add PI to the medical colleges and postgraduate studies” while the least rated suggestion was “Set PI national objectives”.
Conclusion, Recommendations & Summary Concerning physicians:
For PI at direct care level the first priority area of involvement at direct care level was “Getting enough information about their health condition from doctor” while “Express opinion and observations about the delivered care” was the least important PI area.
According to PI at organizational level “Give your opinion in service” was perceived as the most important area they needed to be involved in while “Participation in decisions with the board of directors of the healthcare institutions” was the least important PI area.
More than half the physicians (55%) reported moderate level of involvement, while, only (8 %) reported high level of their patients involvement. Involvement was most reported in diagnosis phase (50%) followed by surgery (34.2%). Only 5.3% reported that patients were not involved in any phase of breast cancer care.
Most frequently reported areas of PI in direct care were ”Get enough information” and ”Know the benefits and risks of treatment” (57.9%). Only 13.2% reported that their patient never got involved in any area of direct care.
Most physicians (66%) showed low satisfaction with the actual level of involvement of their patients, whereas only 8% felt highly satisfied with the current level of their patients involvement.
The most frequently reported patient related barrier was ”Low education and social level” while, the least reported barrier was ”Poor health condition and psychological condition”. The most reported perceived physicians related barrier was “Making the decision without consideration of patient’s opinion” while, the least frequently perceived barrier was ”Physicians’ non acceptance of patient participation”. The most frequently mentioned system related barrier was ”Unavailability of awareness program” while the least was ”Unavailability of patient organizations”.
The highest rated suggestion for physicians was “Adequate oral and written information” while, the least rated suggestion was ”Encourage shared decision-making”. The highest rated suggestion for policy makers was ”Multidisciplinary team” while, the least rated suggestion was” Establish cancer patient organizations”.
Based on these results the following recommendations are to be considered:
Develop a patient involvement strategy that promots patient centered – care.
Define and promote the opportunities of PI at different healthcare levels; clinical, organizational and national.
Include patient involvement in the medical undergraduate and post graduate curriculum.
Consider patient involvement as a continuous professional development requirement.
Physicians should be trained on patient engagement strategies as shared decision making process, informed consent, communication skills, breaking the bad news and patient counseling.