This exploratory study found that gender, age, education level and diagnosis are factors that might influence patients' experiences of living with a PEG, while marital status did not. This study also showed that patients preferred to contact the PEG outpatient clinic with problems about the PEG. Moreover, a majority of patients fed themselves with the PEG, but patients in need of assistance were mainly supported by their spouse and more seldom by district nurses.
Some methodological issues deserve attention. Our study period is limited to two months after the insertion of the PEG. A pre- and post period study should be interesting to paint a deeper light of the PEG experience. A threat to questionnaire surveys is selection bias due to non-participation or missing data. Although the response rate in the current study is relatively high (70%) there is a risk of selection bias. Therefore, the results should be interpreted with caution. The data was collected during ongoing clinical care, and the time with each patient was limited. It is sometimes difficult to get elderly people and patients with neurological diseases to respond to questionnaires due to cognitive impairments [14
]. However, patients not capable of self-responding to the questionnaire and those not familiar with the Swedish language were excluded from participation in this study. These might be patients who are more vulnerable and care-dependent, at least in this early post-treatment period [15
]. There were only 23% of patients with neurological disorders included in this study material indicating that a majority of the neurological patients are excluded because of their state and impairment. The use of a structured self-report questionnaire restricts a deeper knowledge about patients experience, however, it is easy to respond to and not as time-consuming as the use of an interview approach.
Previous literature investigating the experience of living with a PEG is limited. The tradition in the older generations where the woman takes responsibility for the preparation of food [16
] might explain the feeling of limited daily activity among women in the current study. Sociologically, different roles are taken by gender, with different ways of perceiving symptoms and the illness process, with a sometimes over-estimation of morbidity in women. In fact gender differences with consistently worse results among women have often been described in previous studies[17
].Our study confirms that the experience of living with a PEG was not affected by age except that the older patients experienced a decreased ability to influence the number of feeding times per day. Older patients may be more dependent on others than younger patients are [18
] and this in turn might be a negative consequence of living with a PEG. Elderly patients with dependency on others seem to find it of great importance to be offered opportunities for living life as usual [19
]. Patient satisfaction with care depends on the health problem for which the patient is being treated, but is generally high. Personal matters such as education level may however affect patients’ perceptions of satisfaction with care. It has been concluded that satisfaction with care is higher in patients with a low level of education [20
] which is in line with the results of the present study where patients with a university education found feeding to be more time-consuming than those with public or high school education. The fact that every fifth patient was dissatisfied with the PEG indicates a need for careful information about living with the PEG, before insertion of the PEG.
In order to maintain nutritional intake, PEG is often required for cancer patients during a restricted oncological treatment early in the care pathway, sometimes even before the need for enteral nutrition support, and for a limited period [21
], while neurological patients most likely require a PEG later in the care pathway and will live with it for the rest of their lives. Once they agree to receive a PEG, they are perhaps more sympathetic to it. A PEG is suggested to be a milestone in the palliative care of ALS patients [24
] but the fact that 30% of the patients were underweight (BMI below 20) at the time of PEG in the current study might indicate the PEG insertion to be rather late in the care pathway for some patients. Clinical benefits for head and neck cancer patients are inconclusive [10
]. Terrell et al. [26
] found that the presence of a gastrostomy among head and neck cancer patients was associated with the statistically lowest scores in quality of life based on the SF-36 questionnaire, and suggest that gastrostomy is a constant reminder of the cancer disease during treatment. Cancer patients in the current study found the PEG feeding interfered with their oral intake to a larger extent than neurological patients did, but unfortunately there is not much written about these potential different experiences of living with a PEG when comparing diagnoses [27
], but this is probably of great importance for health care professionals to keep in mind. Whatever the patients experience is of living with a PEG, enteral nutrition sometimes is the only alternative for sufficient nutrition.
The major PEG-related problems might not be discomfort, leakage or blockage, but rather interference with family life and social activities [12
]. This might at least partly explain the experience of time-related problems described in this study. Previous research has reported that home care responsibility today is transferred to a larger extent to the patient and their relatives instead of primary care [11
]. This is supported by the results from the current study that when needed, the patient was most often assisted by a spouse and more seldom by a district nurse. Since caring for PEG patients is time-consuming (up to 15
hours per week) [28
] it may place a burden on family members by transferring the responsibility from primary care to the patient and their family [29
It is important that the health care providers facilitate the insertion of PEG, increase the effectiveness of patient counseling and monitoring for complications and to inform and discuss the possibility to remove of the PEG [30
]. The finding that a large group of patients preferred to turn to the PEG outpatient clinic with questions or problems regarding the PEG and feeding, highlights this need for an outpatient clinic with specialized knowledge in PEG care, including a multidisciplinary team for referral of specific problems [31
Previous research has shown that regular systematic nutrition team follow-up for gastrostomy-fed patients does not increase costs and may improve quality of care [8
]. Therefore it can be recommended that all patients receiving a PEG should have access to an outpatient clinic with specialized knowledge in PEG care. There are several ways to improve the life of patients living with a PEG. Kurien et al. shows in a large prospective study that dietetic aftercare community service reduce hospital readmissions [32
]. This is not surprisingly since Brotherton et al. found in semi-structured interviews with PEG patients that issues that was emergent related to the enteral feeding were disturbed sleep, limited ability to go out, limited choice of clothing, difficulties finding feeding places. [29
] By contact with a dietician during the care pathway, support with enteral feeding can be arranged. Enteral formulas must not only suit the patient’s specific nutritional needs, but might also suit the number of feedings per day and speed time for feeding. Moreover, the dietician can together with the patient and their relatives arrange the best suited device for the PEG feeding, as there is a range of devices for administration of enteral nutrition. For instance, mobile pumps and carrying packs with related giving sets can offer a more mobile life than drip stands do. At the time of discharge from hospital it is important that the health care professional at the hospital ward reports the patient to a district nurse. Health care professionals working in primary care are encouraged to collaborate and get support from the PEG outpatient clinic for the further care of the patient at home. This would make the district nurse feel more secure even if inexperienced in caring for problems regarding PEG and PEG feeding [8